Thursday, July 30, 2015

Mepron: Weeks 3 and 4

In week 3 of Mepron I suddenly developed severe muscle pain like I've never had before in my life. It was affecting my sternum, pacemaker area, arms, legs, wrists, ankles, fingers, toes, etc. Every time I'd move any part of my limb my muscles would cramp up; kind of like what happens when you get a horribly painful foot cramp while swimming. I seriously thought that I must be having a problem with low potassium or dehydration but my blood work didn't reflect anything so it must have been part of a Mepron herx. I also had a fever for one day of 103.

I have not been able to run for many weeks. I'm extremely tired and weak. Fatigue definitely worsened in week 4. I don't really feel like getting out of bed; even for normal daily tasks. I would sleep around the clock if I could. My blood pressure is also giving me a hard time. It's been in the high 80's-90's in temperature for over a week now and that's hitting me pretty hard. The octreotide has been great for allowing me to eat more like a normal person, but it doesn't really keep my BP from dropping out 20-30x per day randomly (away from eating). I have been trying to cut back on midodrine but I'd be kidding myself if I said I'm doing okay with that plan. I feel like crap. I should probably go back on it. I'm just being stubborn and wanted to get off something and prove to myself that I can get off any of the medications I take if I have to. I don't like feeling dependent on medications or the doctors prescribing them. I get very stressed and anxious over that.

Yesterday for the first time in several years I had a short episode of an arrhythmia while swimming again. It terminated itself (or the pacemaker terminated it). That used to be common every time I swam so I've avoided swimming for a while. I thought that I had gotten rid of that symptom permanently with both the pacemaker and the beta blocker I'm on but apparently not. I still have my implanted monitor and a pacemaker that can record so I'm well-protected and covered to see any arrhythmia's as soon as they happen. One of my concerns in having chronic Lyme is that it seems to be really after my heart. I'm worried that now that it can no longer stop or slow my heart it will affect it in other ways.......like with lethal fast arrhythmia's or muscular damage.

Tuesday, July 14, 2015

Mepron Week 2: EXTREME anxiety

Well I made it through my 2nd week of Mepron and Zithromax, but I'm not doing well. I have over-the-top anxiety and insomnia. I haven't slept for more than 2 hours for the past week. I've tried valerian, hops, l-theanine, GABA, lavender, lemon balm, passion flower, ashwagandha, valerian, rhodiola, chamomile, magnesium, Orchex, benadryl, and more. NO success whatsoever.

I've been running excessively. I call it exercise OCD. It has happened before on several antibiotics. I can't calm my mind with anything so I just want to run and white out/not think about my life. The other day I ran about 15 miles. I still couldn't sleep. My theory is that my cortisol levels are in overdrive and that's why it's impossible for me to calm myself. That's also why my BP is not completely out of control despite weather in the 90's. I'm still having severe drops, but usually I'm in the ER after several days in the 90's and this week I've been able to avoid that. My meds seem to work somewhat and so do fluids.

The anxiety is completely misplaced as well. The other day a bear charged me. Yes.....again!!! I screamed instinctively and it turned and ran at the last second; changed his mind apparently. I had no fear from that incident but later on while I was trail running on a mountain I've been running on for 20 years, I almost had a full panic attack. I was sick from low BP and overdoing it and instead of just dealing with it like usual, my thoughts were that there were bears lurking waiting to kill me. Completely irrational and unlike me. 

The anxiety is my main issue but I'm also having noticeable increases in pain. My joints and muscles hurt. I normally don't get a lot of pain. I have a LOT of pain around my pacemaker shoulder. I actually thought I might have torn the generator away from the muscle or something. I also am feeling pain from shots and IV's. HIGHLY unusual. I normally have no pain sensation at all in most parts of my body.

I can't take the anxiety much longer and I had backed off of herbs when I started Mepron/Zith but I have to add them back since anxiety/insomnia/stress herbs are not doing a thing for me. So today I added back A-BART and CSA. I'm also taking trace minerals, a liver tincture and lots of magnesium. I hope this calms down. I really don't want to back down!