Last time I posted I was doing better than February, but was feeling things slip away a little bit again. That continued throughout March. It wasn't horrible, but there was a definite feeling of a backward slide. Things got a lot worse the last week in March. I had terrible hand/arm pain, major muscle cramps, internal vibrations and tremors, head/neck/jaw pain, headaches/migraines...
Symptoms:
When I tell someone my hand really hurts, like really hurts, I don't doubt that it's hard to understand. It's a hand... Is it broken? Sprained? Injured in any way? No? Then it probably can't hurt that bad.
Jiminy Cricket... Yes it can. And so can any other random area of my body- isolated or not. Lyme and coinfections do crazy things. This actually seems to be Bartonella for me- a coinfection of Lyme, that often causes more neurological symptoms.
The last week in March, I had horrible nerve pain in my hand- sometimes throbbing/radiating pain, sometimes sharp, stabbing, or shooting pains, sometimes pain in my bones- it traveled, migrated, and changed constantly, but it was pretty constant pain for a good week. Then it started to travel up my arm and up to my shoulder. Sometimes radiating from hand to shoulder and sometimes stopping in an isolated spot and just about bringing me to my knees. There was an overall weakness in that hand & arm as well, and I started to notice that when I was accompanying my students on the piano, I'd drop my right hand out and try to continue just with my left hand, filling in as many missing pieces as I could with one hand.
Then a new symptom came up. The skin on my hand, over a knuckle that was particularly painful, started to hurt to touch. That feeling crept up my arm, all the way to my shoulder. It wasn't the skin over my entire arm and shoulder. It followed a particular path- the particular path that I could feel the pain follow when it would gravitate from my hand to my shoulder. It was very strange- almost like it was following a nerve exactly. The skin was so painful to touch, just along that line. This was new for me. I'd read about other Lymie's having this symptom, and I'd never been able to imagine what it was like. EXCEPT, oddly enough, once I was experiencing it, it felt familiar to me. Although it felt like a new symptom for me in relation to Lyme, I was indeed familiar with it. I realized that every single time I get really ill, like with the flu or something, my skin hurts. It's been that way for years, and I literally thought that was just the way people felt when they were sick. And now I know... Apparently that's not normal... lol.
It's interesting how all these months so far, I've never known how to distinguish what might be a herx from just the regular ups and downs and flares of Lyme and coinfections, but for whatever reason, that last week in March, I thought "this has got to be a herx." I've been in so much worse pain than that, and have had so much more severe symptoms than that, but it felt a little different, and perhaps it was the new symptom in conjunction with the pain that lead me to feel that way. I think it's also how unrelenting it is. I think regular symptoms are up and down a lot more, but when I'm herxing, it's pretty severe, for a longer period of time. When I saw my doctor this week, I laid out how March looked, simply stating the facts. She said "well, it sounds like you've been herxing quite a bit." She'd never said that to me before either, so I thought it was interesting we had the same thoughts.
I also had a really bad episode of severe muscle cramps on the right side of my upper body. Tyler was with me this time, and it legitimately scared him to see it happening. He watched me cry, scream, and squirm in agony and didn't know what to do or how to help : - ( I felt so awful. Right before this one started, I reached behind me to grab something with my right arm, and I lost control of my arm. It was just kind of heavy. Then the Charlie horse started in one muscle in my right lat, and spread across my whole side, back, and shoulder, leaving me in a state where I was unable to move- except in a hysterical way- and crying in pain and desperation for it to end. That one lasted a good five minutes. It was miserable. When it finally stopped, the whole right side of my body was weak and exhausted because the cramps were so intense. I had to lay there for another 10 minutes or so just to recover before I could try to stand up and carry on my day. Those muscles were sore the rest of the day, and my right hand remained weak.
This happened again last night. I was walking back to our front door with Kea, and she got spooked and started barking (her serious, deep and roaring bark), which in turn spooked me. Startled, I jumped, and that quick flex of my lat was all it took to set off another cramp. I fell to the ground when I got in the house, crying in pain until it passed. I've been noticing that although sometimes it's seemingly random, it's been happening a lot when I flex a muscle suddenly. It doesn't always go into a full-blown excruciating cramp, but it seems to start one more easily.
I had a lot of moments when I'd be out running errands and would limp my way through them. It's so amazing how the pain comes and goes, and how I'm sure to an outsider it appears crazy- that I'm not injured, and I look fine, but when the pain settles in my hips, legs, feet, or back, it's so painful that I cannot walk without a limp. If I'm at the grocery store, I use the shopping cart as a crutch. Nothing makes you feel more crazy than entering the store without a limp, and leaving with one (or vice versa)... I'm sure the employees think I'm crazy in the head.
Thoughts:
It's interesting how many strangers have randomly told me "well, you're healthy!" or "good thing you're healthy!" or "that's because you're healthy..." or SOMETHING along those lines recently. I'm probably only aware of it because it strikes a different chord in me when I hear that now. Let me tell you, do not judge a book by it's cover. I know this seems silly. Perfect strangers are saying harmless things that shouldn't bother me, and I'm not saying "don't say things like this to strangers... you don't know!" That is indeed, silly. I'm just saying it's a definite reminder not to judge a book by its cover.
People look at me and because I'm a young, [seemingly] fit, blonde female, so many assumptions are made. So many. Instantly. I don't doubt that we make instant assumptions about others all the time. It's human nature. We judge people constantly, whether we're aware of it or not. It's both nice to hear that people think I look healthy (I'm sure if I looked as ill as I felt, that would do a separate number on my psyche), and it drives me up the wall.
The woman who did our taxes skipped over "medical bills," because she made an assumption. Tyler and I stopped her and said, "perhaps we should look at that." She said "oh no, you'd have to be seriously ill for that to apply to you." And I kind of laughed under my breath. She said "I hope neither of you are that ill. Your bills would have to be around $10,000..." and we looked at each other with kind of an "eff it, it's not worth the battle" face, and let it go. The only reason our bills didn't add up to $10,000, was because I didn't start treating until August, FYI.
Try not to make assumptions. I'm trying not to.
It was exactly a year ago today that things took a turn for the worse with my health. Up until that point, I had a few symptoms that were pretty constant (joint pain, for one), but others would come and go in episodes.
But April 11, 2014, a bad episode began. I had tremors, chest pain, heart palpitations, shortness of breath, dizziness, weakness, cognitive difficulties, shooting pain, numbness & tingling... A plethora of symptoms, every one of them with extreme severity (I didn't drive), and I had no idea what was wrong with me. Urgent care did tests and EKG's, and told me nothing was wrong with me. But the reason this was a turning point is because since this day a year ago, the symptoms stopped coming in waves, they became constant. I suppose I should be thankful, because this is what lead me to push for an answer.
Treatment:
I am remaining on the three antibiotics (Ceftin, Zithromax, Rifampin), and we added in an herbal tincture for Bartonella again. I took this tincture last September as well, before I started any antibiotics. Since my neurological symptoms recently increased again, my doctor wanted to hit Bartonella (coinfection) a little harder. I'm starting with a quarter dropper, twice daily, and will increase to half a dropper, twice daily if I don't herx from it too badly. I had a major increase in palpitations for a couple of days after starting it, but it seems to have settled down again.
My doctor gave me a good magnesium supplement to see if it helps with the crazy muscle spasms at all. Lyme and coinfections seriously deplete vitamin and mineral levels, so it could be the result of a pretty good magnesium deficiency. I hope that's what it is.
Good news- My blood pressure was 100/60 again at my appointment this week, a continued increase from 80/40 for sure! Woo hoo!
Besides the chest pain, palpitations, shortness of breath, etc., my doctor listened really closely to my heart and heard an arrhythmia. She wasn't too concerned, but it's there. She sent in an order again for me to get an EKG and Echocardiogram to check things out (I had to cancel my previous cardiology appointment). Probably just symptoms from Lyme or Bartonella, but we will find out for sure.
Lyme Disease Challenge:
Thank you to everyone who's partaken in the Lyme Disease Challenge! It's pretty amazing how many people the campaign has reached and how much money has been raised to go towards research. It's also amazing how much attention Lyme is starting to get in the media. This week, Dr. Oz did a segment on Lyme, and did the Lyme Disease Challenge- what a way to raise awareness. My heart goes out to Avril Lavigne, who recently came out about the fact that she's been fighting Lyme since last year. It's unfortunate that it takes a celebrity being ill to get Lyme some attention, but I'm thankful for Avril choosing to be so open about it to educate the public. Thank you, Avril!!
It's never too late to take the challenge. All it takes is a picture of yourself taking a bite out of a lime, with one fact about Lyme Disease. That picture and fact are guaranteed to reach quite a bit of people who have never even heard of Lyme- and that's the point : - )
