The further adventures of Nyxie in Piccland
Jun 18, 2008 06:51AM
- 2 comments
Things have been *ahem* interesting since the last time I posted.
Shortly after my last post, the left side of my face went completely numb and I started having chest pains. Went to the ER, because neither is anything to mess with. They ran an EKG, xrays to see if the picc had slipped out of place, a CT scan to see if I had a stroke, and an ultrasound of my neck to see if the picc was pressing on any vital structures. Nuthin. We figured it was all a reaction (a positive one, believe it or not) to the new med.
So we get back home, where my care package was waiting for me. Oh Goodie! A huge box of medical supplies. Just what I always wanted! :-P
Anyway, the nurse shows up shortly thereafter. Didn't do a dressing change, in spite of the large amount of bloody seepage under the bandage. Saved that for Friday.
Thursday and Friday, I found myself in a world of hurt. Not only did the bruises from the insertion decide to start popping up then (with a vengance - good thing I look good in red, purple, and blue) but apparently my reaction to the meds wasn't limited to what I'd mentioned previously. Every joint in my body ached. About a 7 on the pain scale. The occasional tremor in my hands was worse than ever. Also had a headache and felt like there were clamps on the backs of my eyes. This was my first herx!
A herx, btw, is when bacteria die off in the body and release toxins into the bloodstream. It's usually seen as a positive sign that the medication is working. It manifests as an exponential increase in symptoms and lasts for a couple of days.
By Saturday, I was feeling considerably better. Pain had died down, including the chest pain. Had some residual eye pain, but it was bearable. Tremor was gone. Numbness was better. Sunday and Monday were more of the same. Had another dressing change which was not the most pleasant experience. Had blood taken on Monday to check my CBC and liver levels.
Then yesterday, a few hours after I woke up, the left side of my face was numb again. This time with slight drooping and the numbness extended to my neck, shoulder, upper chest, and upper arm. The left side of my mouth didn't want to work and talking was kind of a challenge. Hand tremors were back with a vengance. My first thought was Bell's Palsy (which is common with Lyme), although if I had a brain in my head I'd have probably gone back to the ER to make sure it wasn't a stroke. Hindsight and all that.
Called the dr's office and left a message wondering if it was an emergency or not. Since I've been to the ER 3 times in the last 6 months and they haven't found anything, I just figured it was more of the same and decided to blow it off.
The drooping and most of the numbness resolved after a few hours. Of course, by that time the dr's office decided to call me back. We went through the symptoms of a stroke and figured it was just Bell's Palsy (although it still niggles in the back of my head that it might have been a TIA - blood clots are one of the possible complications of having a picc). But anyway.....
Later that afternoon, the doctor calls me back. They got the results of Monday's blood tests back. My liver levels are high. Really high. While the med is doing some good on the bacterial front, it's doing bad things to my liver. The high end of the range for AST levels is 50. Mine was 154. So I'm off the IV antibiotics for at least a week. Have to start taking supplements to clean out and repair my liver now.
So here I am. Unmedicated and still have this "thing" in my arm. Have to make a run to the health food store today to pick up the boatload of new supplements. Have a dr's appt tomorrow. Not really sure why at this point. I don't really think we have anything new to go over. Other than getting the latest copies of my test results, there's not much in it for me. A 3-1/2 hour drive each way plus the out-of-pocket expense for gas, food, and the dr's appt (they don't take insurance) just doesn't seem to make it worth the effort. Thinking I might call today and reschedule in a few week's time.
And in other news....
Today's the day the Pitts neuro panel is reviewing my case. Seriously nervous about it. Torn between hoping they'll find nothing and everything's the result of the lyme and between them actually finding something that explains what's been going on. I should hear back from them sometime between this afternoon and Friday with their recommendations.
Keeping my fingers crossed, but not really sure why.
Shortly after my last post, the left side of my face went completely numb and I started having chest pains. Went to the ER, because neither is anything to mess with. They ran an EKG, xrays to see if the picc had slipped out of place, a CT scan to see if I had a stroke, and an ultrasound of my neck to see if the picc was pressing on any vital structures. Nuthin. We figured it was all a reaction (a positive one, believe it or not) to the new med.
So we get back home, where my care package was waiting for me. Oh Goodie! A huge box of medical supplies. Just what I always wanted! :-P
Anyway, the nurse shows up shortly thereafter. Didn't do a dressing change, in spite of the large amount of bloody seepage under the bandage. Saved that for Friday.
Thursday and Friday, I found myself in a world of hurt. Not only did the bruises from the insertion decide to start popping up then (with a vengance - good thing I look good in red, purple, and blue) but apparently my reaction to the meds wasn't limited to what I'd mentioned previously. Every joint in my body ached. About a 7 on the pain scale. The occasional tremor in my hands was worse than ever. Also had a headache and felt like there were clamps on the backs of my eyes. This was my first herx!
A herx, btw, is when bacteria die off in the body and release toxins into the bloodstream. It's usually seen as a positive sign that the medication is working. It manifests as an exponential increase in symptoms and lasts for a couple of days.
By Saturday, I was feeling considerably better. Pain had died down, including the chest pain. Had some residual eye pain, but it was bearable. Tremor was gone. Numbness was better. Sunday and Monday were more of the same. Had another dressing change which was not the most pleasant experience. Had blood taken on Monday to check my CBC and liver levels.
Then yesterday, a few hours after I woke up, the left side of my face was numb again. This time with slight drooping and the numbness extended to my neck, shoulder, upper chest, and upper arm. The left side of my mouth didn't want to work and talking was kind of a challenge. Hand tremors were back with a vengance. My first thought was Bell's Palsy (which is common with Lyme), although if I had a brain in my head I'd have probably gone back to the ER to make sure it wasn't a stroke. Hindsight and all that.
Called the dr's office and left a message wondering if it was an emergency or not. Since I've been to the ER 3 times in the last 6 months and they haven't found anything, I just figured it was more of the same and decided to blow it off.
The drooping and most of the numbness resolved after a few hours. Of course, by that time the dr's office decided to call me back. We went through the symptoms of a stroke and figured it was just Bell's Palsy (although it still niggles in the back of my head that it might have been a TIA - blood clots are one of the possible complications of having a picc). But anyway.....
Later that afternoon, the doctor calls me back. They got the results of Monday's blood tests back. My liver levels are high. Really high. While the med is doing some good on the bacterial front, it's doing bad things to my liver. The high end of the range for AST levels is 50. Mine was 154. So I'm off the IV antibiotics for at least a week. Have to start taking supplements to clean out and repair my liver now.
So here I am. Unmedicated and still have this "thing" in my arm. Have to make a run to the health food store today to pick up the boatload of new supplements. Have a dr's appt tomorrow. Not really sure why at this point. I don't really think we have anything new to go over. Other than getting the latest copies of my test results, there's not much in it for me. A 3-1/2 hour drive each way plus the out-of-pocket expense for gas, food, and the dr's appt (they don't take insurance) just doesn't seem to make it worth the effort. Thinking I might call today and reschedule in a few week's time.
And in other news....
Today's the day the Pitts neuro panel is reviewing my case. Seriously nervous about it. Torn between hoping they'll find nothing and everything's the result of the lyme and between them actually finding something that explains what's been going on. I should hear back from them sometime between this afternoon and Friday with their recommendations.
Keeping my fingers crossed, but not really sure why.
Most of that flew right over my head, and no offense, but I sort of hope I never understand what you are talking about.
I am so sorry you have been through all that frightening mess, and I hope the palsy/stroke symptoms are gone for good now. I wish you luck with the evaluation, and I hope you are feeling much better soon.
I am so sorry you have been through all that frightening mess, and I hope the palsy/stroke symptoms are gone for good now. I wish you luck with the evaluation, and I hope you are feeling much better soon.
LOL! Sorry about that. Sometimes I forget not everyone has a secret decoder ring. ;)
Yeah, it's just as well. This disease really ***** and it's nothing I'd want to see anyone else go through.
The neuro review was done and they got back to me. They didn't find anything, so it's apparently the lyme causing all my neuro problems (tremors, seizures, palsy, etc). I have an appt with a local neuro on July 17th and hoping he'll order some testing, mostly to see how bad the damage is. Hoping none of it's permanent.
Still have some numbness on the left side of my face. The droop is gone tho. That's a good thing. Even though I was only on the IV antibiotics for a week, there was some progress. My light sensitivity is gone. Don't have to wear shades all the time anymore. And I have some mental clarity back.
Thanks for the well wishes! You take care too. :)
Yeah, it's just as well. This disease really ***** and it's nothing I'd want to see anyone else go through.
The neuro review was done and they got back to me. They didn't find anything, so it's apparently the lyme causing all my neuro problems (tremors, seizures, palsy, etc). I have an appt with a local neuro on July 17th and hoping he'll order some testing, mostly to see how bad the damage is. Hoping none of it's permanent.
Still have some numbness on the left side of my face. The droop is gone tho. That's a good thing. Even though I was only on the IV antibiotics for a week, there was some progress. My light sensitivity is gone. Don't have to wear shades all the time anymore. And I have some mental clarity back.
Thanks for the well wishes! You take care too. :)
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