Lyme Update

This is a long overdue update, and for that I apologize. I’ll try to make this as comprehensive but brief as possible as I know some of you are curious as to what is going on.

For starters, Friday is my last day at my current job. I know many of you that are reading this don’t know this news and will likely be surprised. I’m surprised too, but it’s a decision that had to be made. Non-profit gigs do not pay well, at all. And with a disease like Lyme, which is a costly disease to treat and manage, I had to make some very difficult decisions about my employment. Early in January I officially turned in my 4 week notice and as of next week, I’ll be back in Medical Device Sales. This move will allow me additional financial opportunities to fund the growing expense of my treatment. 

Some have questioned my decision to move on. All I can say is that when you are facing 2(+) years of treatment that isn’t covered by insurance with nearly a $40K price-tag, you have to do things you don’t want.

With regards to the Lyme, I’m still on-hold from antibiotics. My taste hasn’t come back and although I’ve been able to gradually increase my caloric intake from 600 calories a day to almost 1,200, I’m still lacking in some of the basic nutritional categories. Protein still remains a struggle and for that, I’ve turned to juicing to help out. I’m now averaging 1-2 homemade juice drinks a day, made from fresh organic produce. I try to get 2/3 veggies and fruits in each drink, which helps with rounding out my diet. Otherwise, white rice is still a big favorite in my diet.

On the appointment front, I finally have a Dr.’s appointment with the University of Pennsylvania Sm.ell and Tas.te Disorders Clinic the first week of March. I’m hoping that this appointment will help determine what went wrong with my senses.

Otherwise, I’m still trucking along over here. No significant improvement or deterioration. Just hanging on.

 

So my nervous system is shot

Goddamn it.

I’m so done with this disease. I’m over treating it. I’m just pissed the fuck off right now.

I finally was able to speak to my Lyme Dr. today after waiting 23 days to talk. I told him about my lack of eating due to taste (300 calories yesterday) and how bad I’ve been feeling because I have no energy left, and he is ceasing all treatment. It’s his opinion that the Lyme is attacking my central nervous system and therefore causing my body to go into “freakout” mode. The nerves that tell my brain to eat and taste are being impacted by the die off of the Lyme from the antibiotics. Die off is a good thing, except when it reacts in this way. Which is just perfect. Right?!?

So the next step is to stop all antibiotics and immediately begin Neurotin – a new and super fun drug (grrrrr) that will hopefully allow my central nervous system to repair itself and get back to normal.

Will I ever eat again? I don’t know. My LLMD doesn’t seem to know. All we both know is that for now I can’t live off of 300 calories a day and there’s no way I will get better on this path.

So yep, pulling the plug on the past 7 weeks of treatment.

I am over this. This is the most upsetting and frustrating disease I’ve ever heard of. There are so few Dr.’s that treat patients, the treatments are all nutty, and I’m just over this.  I want my life back. I want to eat and I want to be done with this.

I’m a mess

The title says it all.
I’m a mess. A tea-total mess. I hurt all over. I’m exhausted to the point of no return, and I’m starving to death.

My average daily caloric intake is around 600 calories per day. I can’t eat because for 21 days and counting, I haven’t been able to taste food. 

My break week from meds didn’t seem like much of a break. I managed to get up to my LLMD’s office last week to get a Meyers Cocktail IV which helped for about a day. Then back into the abyss.

I’m so sick of being sick and complaining. I hate myself right now.

I just want my life back.

 

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