Hanging In There...

I have been pretty sick with starting up on everything again, which was no fun over Christmas, but I didn't want to wait any longer to get back on my meds since I had been off them for awhile. I started back on 100mg of doxycyclene twice daily along with all my other supplements. After five days I will add in another 50mg doxy to the mix. Five days after that I will add Biaxin, then over the next 10 days two other antibiotics. Slowly building the dose/adding drugs helps to lessen the shock of it, and I'm glad my doctor likes to be cautious.

My joint pain has come back with a vengeance, making it hard to do simple tasks. I have also had headaches, nausea, hot/cold flashes, muscle aches and severe fatigue. YIKES. I really wish I had not stopped taking everything. In spite of all this, we have had a good Christmas break in Oregon, and have had lots of fun with Bryan's family. He is great about helping me out, and if I'm not able to go somewhere or participate in something, I'm glad that he is able to. Although I generally try to do as much as I possibly can. Lying in bed 24/7 only adds to discouragement, and I have to stay positive! I'm learning that you have to force yourself to focus on positive/good/fun things and I find myself making lots of plans for the future. It's mind over matter like I've never done before...

I Did Something REALLY Stupid...

I have been really discouraged now for the last couple of months, which I guess is normal given the circumstances. But I did something really, really stupid and I'm going to blog about it so I won't do it again, EVER. Because I was discouraged, and partly because I was concerned about money, I skipped my Seattle Dr's appointment in October and ran out of my meds the day before Thanksgiving. So I have been off my meds for 3-4 weeks. Most of my symptoms have returned, but this time an added new bonus is a pretty substantial tremor in my right hand/arm that seems to get really bad when I am tired, and I'm having pretty bad balance issues.

My appointment in December was on the 18th, and I made sure to go this time. My doctor was not happy with me AT ALL, but updated all my prescriptions and has gotten me started on all my stuff again. I have started everything again as of today, and I'll keep you posted as to how I feel moving forward.

An Alternative to Mepron...Alinia

When I went to the doctor in Seattle this morning, I told her that I could not afford to stay on Mepron. Unfortunately, Mepron has been the most effective of any of the drugs I'm on, because it is a very strong antibiotic and it's an anti-malarial. One of the infections that I got from that tick bite was Babesia, (I actually have two different strains, Babesia duncani & Babesia microti.) Babesia is an infection of the red blood cells, and is extremely difficult to treat. Traditional treatment is with high doses of anti-malarial drugs, Mepron (atovaquone) being among the best.

The problem is that Mepron costs me $465 every ten days (that's with my Rx insurance) except that since I've been on it for several months, the insurance doesn't want to cover it anymore, so the full cost of about $4500/month just for the Mepron, would be up to us. I told my doctor that it might as well be a million dollars, because we don't have $4500 a month to spend on one antibiotic. We have looked into several prescription assistance programs, but because I have insurance, (even though it won't cover Mepron,) we don't qualify for the programs. This was extremely discouraging, because in some ways, I feel like Mepron was giving me my life back.

Well, great news! There is an alternative to Mepron, called Alinia (generic is Nitazoxanide or Nizonide) that has been effective for some people that didn't respond well to Mepron. It is in tablet form, and is about $1200 from a pharmacy if purchased in the U.S., but we are looking into trying to get it from Canada or somewhere else. I will keep you posted on our search and also on how I respond to it here in the near future. We are cautiously optimistic that this might be a great alternative for me.