Posted 2/9/2014 6:42 PM (GMT 0)
I haven't been checking in on this site in a while because things have been a little crazy for me. I need some experienced Lymers to tell me if my situation is normal, if I'm getting better, or if I need to go to a hospital.
I'll start by saying I started with Lyme symptoms in December 2011, but I was not diagnosed until July 2013, and I didn't start treatments until December 2013.
I started Rocephin IV infusions back in December 2013. We did a full upper-abdomen ultrasound before I started, and everything came back clear. When I was coming up to my fourth week of Rocephin I started having terrible (I mean TERRIBLE) pain in my right side. The first night it happened I was lost and confused as to what could be causing it (I thought it must be the worst gas in the world or something, because my mostly-veggie diet was still doing a number on me). The pain passed in less than an hour of me crying in bed. Two days later I went to work and my boss said I didn't look so good (she knows all about my Lyme problems), and she said my eyes were really yellow. I went home to rest, and that night the pain returned... big time. It didn't pass after an hour, and it was worse than ever, so (thinking about my boss's comment), I decided to go to the hospital. They did some scans and found that my gallbladder was wrecked and had at least one gigantic stone in it. (I was on ursodiol that was supposed to keep that from happening.) They guessed that the first night of pain I passed a smaller stone, but this big one wouldn't be getting out of there. I had my gallbladder removed the next day. The surgeon told me that there was lots of sludge and nasty particulates in the bile ducts that he couldn't get cleaned out, so he was still worried about my liver. It's just over a month after surgery now, and my liver levels are still elevated, but not too high.
My LLMD had me stop all abx until he could see me the following week. 5 days after stopping the abx, I noticed symptoms starting to return. I hadn't been feeling like I was cured or anything, but I was doing a little better. My headaches, eye pain, fatigue, and more started building again. I started vancomycin about 10 days after my surgery.
Here's another wrench in the mix. My whole family got terribly sick last week. My wife got the flu and bronchitis, my daughter and son had ear infections and colds (maybe flu), and my daughter also had walking pneumonia. I took over trying to take care of the family, and after catching a lot of the sickness going around --along with my Lyme problems-- I started feeling like walking death. Just a few days of doing what my wife did every day nearly did me in. Either the physical activity or flu symptoms made it to where... I guess the easiest way to say it is it felt like super-fibromyalgia. Absolutely everything was excruciating. Washing my hands was dreadful. My skin, my joints, my head, my eyes... just terrible. This was last week. Things got a little better, but yesterday it was all back. Nausea, fatigue (I slept most of the day), and pain everywhere. Today I am able to eat, but I still have pain everywhere.
So, I have this terrible pain in my back and right side that is like lighting on my skin. It hurts into my side, but mainly it's like tender skin. My t-shirt contacting my skin is like being struck by lightning. This started about 2 weeks ago, and my nurse and PCM said it is shingles, and I should see the rash in a couple days. It's been over a week and I haven't seen anything, but the pain is getting a little better on it's own. I was thinking the pain is over the kidney, which processes vanco... but again, the pain is more on the surface, not as much on the inside. Still, two days ago there was protein and other stuff in my urine.
My eyes are yellow. I only drink water (no soda, coffee, not even juice, and especially not alcohol), but maybe I could drink a little more water than I do. Am I dehydrated? Is this related to the liver sludge? Lack of gallbladder?
My teeth and gums feel like they're falling out (lots of pain). I take great care of my teeth. I've never had any dental restorations at all... my dentists love me. But, suddenly, it feels like my gums are having real bad headaches. Is this from the vanco? Could this be sinus related? I don't have any other sinus related problems, but my whole family had upper-respiratory infections a week ago, so maybe I caught something? I'm afraid to take this mouth pain to my dentist because I'm a military guy, and our dentists don't seem to be very good.
Anyone else have a PICC line? Is it normal to feel it in your chest when you lay on your side? Sometimes it feels like it takes my breath away... or is that the babesia? The skin around my PICC line is looking gross. Broken out, and some of the red bumps look like they've popped(?), with yellowish scabby things on top. Gross, right? That's all happening under the clear adhesive bandage around the PICC site. It's probably just irritation from the adhesive.
My scalp is in constant pain and hurts more to touch. I've been losing hair since I got sick two years ago, but my scalp never hurt like this. I've had my wife take a look and it isn't red or anything.
Since I've been sick my body temperature stays at 97 or lower. Lately I've felt like I've had really bad fevers, but that's when my temp is in the 96s. I check my thermometer on my wife and kids and it works fine for them, but for me it always says I'm freezing, even though I'm always hot and sweaty. At the same time, my wrists/hands and feet get so cold they hurt. It's like the cold comes from inside the bone.
I just want to know if all this is working. When I was on the rocephin (infusions twice a day) along with alternating Tindamax with Alinia every two weeks, I was feeling a little better. I've been on this vanco now for about a month, and I feel worse. This could be because I have the flu or something, and the surgery... I don't know. I just started the Alinia again on Friday. They're ordering four more weeks of the vanco, and I guess I'll start the tindamax again in two to four weeks.
I have Babesia abx/meds in a bag in my room, but my LLMD says it isn't time for those yet. He seems to be very knowledgeable and experienced on the stages these parasites go through.
My primary concerns (in no particular order): scalp pain, teeth/gum pain, yellow eyes, pain on right side of back.
OK! That's everything I've been brooding over for the past month. Can anyone relate to any of that, or put all those pieces together?
Thank you for your time and for letting me vent all of that.