Well, rocephin was good. No, it was great! Notice I said WAS. nearly 3 months into IV Rocephin, I switched to the balls from the pain in the butt gravity bags that drip from that long pole. I was becoming more mobile & thought my medication should too. But as soon as I switched I went down hill & FAST! It came as the same time as my normal Lyme cycle. On rocephin , I skipped an entire month of a Lyme cycle so I had 2 months straight of good days. That would explain my absence from Facebook & this blog. When I feel good, I am living! I don't even want to think about Lyme disease. Like it is already a long lost memory.
Well, Lyme cycle hit, and this time it was a bit worse than normal. But I thought nothing of it. I know my body & I know this disease in my body. I know that yes, the bad days are pretty horrible. I am cranky, irritable, in pain, feel like crap, and almost wish I could detach my head from my body & just put it on ice until it all passes. But this time, after my usual 4 days of torture passed, I started to get worse and worse. It used to take me 3 weeks to pull out of cycle. But with a year of treatment, I was doing 3-4 bad days a month! I can live with that. 12 days passed & I decided that something was just wrong. I felt just about as bad as I did 5 months prior. This wasn't good. Joint pain, malaise, neck pain, headache that felt like my brain was going to swell out of my head, muscles twitches at an all time high, muscle weakness & shakiness, muscle pain & BELLS FLIPPIN' PALSY!! I only get it in my forehead, so you can't tell, but my forehead was numb again!! Only things that have changed were that I ran out of my LDN the past couple of weeks & while waiting for a paycheck, I couldn't refill it just yet. That, and I switched from IV gravity to those darn balls. But it's the exact same meds/solution, just different way of infusing. It takes less time & the Eclipse Home Pump is a ball that is pressurized in a balloon that gives you a steady stream. It's neat because you can just throw it in your pocket or purse & go. It also takes a minute to get it set up versus 10 minutes to set up the gravity.
So I am sick & desperate & consulting with my online Lyme friends to see if any of them had gone through a similar spell while being treated with rocephin. Nope, must be treatment failure. NOOOOOOO!!! I have my insurance miraculously covering all of this, nurse, meds, supplies, etc. I can't have to change to something they won't cover. So I spoke with my Lyme friend Melissa who lives in PA. I was asking her how she was doing. She had gone from Rocephin to oral antibiotics (had to quit because $800/wk was probably killing her) and last I had talked to her (months ago), she was doing well. So I got her update & she is doing great. She asked about me & I told her BAD, I am doing really BAD. I explained any changes, and when I mentioned the ball (Home Pump) she said, THAT'S IT! She said her LLMD (Lyme doc) told her that she is to infuse over a long period of time. I told her the pump went in about 20 minutes & my drip bags take about 35 mins to an hour. OK, that gave me some hope, and my husband was saying all along, "It's those balls that are making you sick!". So I experimented, I had 2 balls left & would have to wait for a couple of days for a new order. So I used the clamp to start & stop my ball so it would last over an hour. 10 seconds on, 5 seconds off. Yes, this was tedious, but this is my health & my life we are talking about. The next day, I woke up feeling better. Was it a coincidence? So I have had 2 decent days since. One day I got out to my step son's first baseball game. And made it to Costco without too much trouble. And today except for the lazy feeling (fatigue) I feel pretty OK. So with 2 weeks being on the ball & now about 6 days back on gravity, either I am recovering from my relapse of symptoms, or I am coming out of my cycle. I may never know.
My Step Son Contracted Lyme Last Week!
On another note. My step son went to the baseball field to practice with his winter ball team & wore shorts. They were just doing conditioning that day. The next day he had a big 'ol bite on his leg. No biggie, just looked like a spider bite. Stuck a little benedryl on it. The bump/bite healed & was gone. Until Sunday. He comes home from his grandparents house & says, "look what showed up where my bug bite was". It was a bulls-eye rash! So I took a pic of the rash & posted it on my Facebook & Twitter asking people what they thought of it. I kind of doubted that it could really be Lyme. I mean, what are the odds? Two of us in one family infected witihin 1.5 years of each other. Mind you, we live in a place that the health department and doctors swear there is no Lyme. Everyone said, "Bulls eye, bulls eye, bulls eye". Then I went online & looked for pictures of Lyme bull eye rashes. Because it wasn't a total Target logo. But here they were exact matches of the rash that were confirmed Lyme cases. SHIT!
So I called the hubby because I was too sick to drive & I said come home NOW & take him to the doc. They get to an urgent care & the doc had the where with all to know a Lyme rash when he sees one. He said that blood tests are not accurate enough & the rash counts just as good as any positive Lyme blood test. He wrote a script for a pathetic 10 days of doxycycline of a low dose (100mg twice daily). Lucky for me, I already knew this boy needs 200mg twice a day for 30 days, not 10. So that's what he is on. He is really tired constantly, but so far that is all we see. He is still playing baseball & the rash started to go away pretty quickly by the next day. I called my lyme doc & he said that's from the doxy doing it's job. Let's hope this cures this kid. It was about 5 days after his bite that he started treatment. He is 14 years old so he is old enough for doxy.