OK...you said to communicate. -a strange event that comes with walking. It
does not always happen but usually does if I try
to walk any distance such as around a grocery
store.
SYMPTOM: Legs, Bilateral: -On abx the buzzing patches had
gone away that usually occured with walking as
well as the numbing patches.
Two weeks ago I emerged from my car to a
frightening situation. My legs were weak, the
patches returned, and it made me tired. It waxs
and wans. It is postural. It is aggravated by
walking. It feels as if it is coming from my
lumbar spine area. Such as a transverse
myelitis.
The feeling is overwhelming when it comes. It is
painful in a weird way, feels weak, and weird as
if I ran 300 miles.
Is that a herx? How am I supposed to go to school this fall? Will this go away?
John.
[ 02. July 2006, 08:09 PM: Message edited by: LostCityAgent ]
Posted by LostCityAgent (Member # 9050) on :
and, again, thanks for helping me to come out of my sorrow.
I struggle day by day.
Posted by Kentucky Girl (Member # 8587) on :
I have this problem too. I used to have it all the time but it has gotten better with treatment. It does happen more often with a herx.
One thing that helps me is glutathione injections. It helps especially with the feeling of heaviness/numbness/deep aching I have when I walk.
John, pray to God for direction with school this fall. You may be too weak to go full-time. Thats okay, you need to heal yourself first. You need as much rest as you can get, school will be much easier when you can focus and put all of your energy into it.
Hope you start feeling better soon. Keep positive and connected to people through the rough patches. You WILL get through this!!
Posted by Michelle M (Member # 7200) on :
Could be a herx. Could be lumbar spine issues which need looked at via MRI. Stay on your antibiotics. Schedule your MRI.
Fall is a ways off. You might have a rough time ahead -- the first six months of treatment is NOT like tea and crumpets. (Come to think of it, I think the crumpets would be out entirely.)
You might need to lighten your load to work around having Lyme. It will NOT follow your schedule or plans.
I always plan out how I would deal with each eventuality, then decide I'm going to have the best possible outcome. Keep that outlook and hopefully things will look better soon!
Michelle
Posted by trails (Member # 1620) on :
I have had very similar feelings---I describe it like one body part is SUPER DUPER fatigued. to the point of burning. It happens very very fast and it is either bothe legs or arms. I almost let go of the sterring wheel a few weeks ago because it happened while I was driving!!!
It is like I just did 1,000 reps with 100 pound weights and I was being forced to do another one without a break.
Is this what you feel?
I dont know the rhyme or reason for this, just know that I feel it.
I hope you dont feel it too much today.
Posted by LostCityAgent (Member # 9050) on :
Thanks, I seem to be getting better all of the sudden. Also, I was begining to have joint pain prior to abx, it is all gone. Also, before abx I was having problems urinating, that is gone too.
So..I need to look at the positive. You all mean a lot to me.
John.
Posted by bugabooboo (Member # 7383) on :
Yes, Yes...dig as hard as you have to to find the positives, and thank God for them, but don't deny reality...keep us posted!
We are praying for you,
Bug
1John 4:18
Posted by LostCityAgent (Member # 9050) on :
How does the IV thing work? Where is it located on the body?
If one was say a Nun with a full habit, how would it work?
also. I can smell the abx in my urine. Does this mean that it has finally integrated into my body?
Also, I have severe itching on my right hand and forearm. This has been around a few weeks. I scratch until it is raw. Could that be too much sun or abx response?
John.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LostCityAgent: Thanks, I seem to be getting better all of the sudden. Also,
Yes!!!!
The IV would either be in your forearm or in a port in the chest. Usually, in the arm.
Posted by trails (Member # 1620) on :
the rash could be sun exposure---are you on doxy?
Posted by LostCityAgent (Member # 9050) on :
yeah, doxy. It isn't a rash. My arms are tan (I havent burned much) ...
can I demand the IV in my chest instead of arm?
Also, what are the long term effects of antibios?
Posted by LostCityAgent (Member # 9050) on :
Also, I am having a lot of fatigue. CAN LYME be triggered by heat?
Posted by lymednva (Member # 9098) on :
Yes to the heat.
I made the mistake of spending too much time out in my hot garage yesterday, watching my brother organize it for me. Today my fatigue has been awful.
Sometimes I also experience nausea from the heat, but that usually comes at the time of the heat, not after.
Posted by Carol in PA (Member # 5338) on :
John, When the antibiotics are in your bloodstream, the kidneys filter it out, and you can smell it in your urine.
Regarding the itchy rash on your arm: Scratching until it is raw is not a good idea. Try a little cortisone cream to stop the itch. You can get an infection by scratching too much.
Carol
Posted by Kentucky Girl (Member # 8587) on :
I got that hand itching when on Doxy. I would get it if I spent just a few minutes in the sun. It was awful, cream helped. I also got where my feet felt as if they were burning off of me if I got them in the sun.
Whew, I am now on Zithromax and like it much better but I do believe the doxy helped kill a lot of those boogers. My head feels much clearer off the doxy so that may be a good option if you go back to school.
Posted by trails (Member # 1620) on :
I had to wear white gloves all the time on doxy. Even in Maine in the summer. and ESPECIALLY when driving. The tops of my hands are forever sensitised to the sun. OUCH!
Watch out for cortizone cream---it is a steroid. I would suggest something like plain lotion to start with or aloe vera.
You can suggest a central line in your chest. There are positives and negatives to both a picc line (inserted at the bed of the elbow) and the port-a-cath inserted into your chest.
Risks of long term abx---are very long, but risks of lyme out run them almost every time.
Posted by LostCityAgent (Member # 9050) on :
Hi, OK, so the pic line. Can someone tell me how that works? Like can it go unnoticed under my chest and shirt? Or do I walk around with an IV drip? Or is this once a day?
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by LostCityAgent: Hi, OK, so the pic line. Can someone tell me how that works? Like can it go unnoticed under my chest and shirt? Or do I walk around with an IV drip? Or is this once a day?
John, a PICC line is awful easy.
You lie down. A nice coupla nurses insert it into your arm. (Forearm, or just above your elbow.) Not much more traumatic than giving blood, really.
Then you walk down the hall and take a quick x-ray to make sure it slithered into the proper place.
Once assured, they tape it down all pretty. Leaving you a nice little port end to screw into, with enough "hose" to do it yourself. So that you can screw on the matching end of your pre-measured Rocephin doses.
Then they give you your first dose right then and there, so they can watch & make sure you don't turn green or get 'the vapors.' They make sure YOU know how to do it. (You'll be nervous that you're gonna forget, but it's impossible to do it wrong, fortunately.)
Off you go, to home.
Every morning you infuse, using a little battery operated, lightweight unit that practically fits in your pocket. You throw a pre-measured syringe of Rocephin into it, turn it on, screw it into your port (sterilize the heck outta everything FIRST!!!), pour a cuppa coffee (sorry, I am s'posed to tell you NOT to drink coffee), and infuse.
At the end, you normally "chase" your infusion with a Heparin infusion to keep your vein in good repair.
Once a week, you jump in the car and drive to the nurse to get them to do a spiffy bandage change.
That's all there is to it.
It's NO BIG DEAL.
Long sleeves will cover it.
They'll give you a white elastic thingie to cover it with also. No one can really tell what's under there.
Don't worry about it. I usedta be really scared to get mine and it was SO easy, I couldn't believe it. The herxing wasn't nearly as bad as previous herxes on orals, either.
It's a piece a cake.
Michelle
Here's my PICC line after a little too much fishing. (You shoulda heard my nurse ranting at me about 'phlebitis' or something like that from repetitive motion. It cleared up with warm compresses.) That's the crook of my elbow -- a really bad location for a PICC line.
Posted by LostCityAgent (Member # 9050) on :
Wow Michelle,
That looks funny. So how do you feel now? How many years or months ago did you start treatment?
Did you ever get a lot of phlegm? Did your body every completely vibrate? Did you sleep 8 hours and wake up tired?
Well---HAPPY 4th anyway. You are all a great help to me.
![[group hug]](graemlins/grouphug.gif)
![[shake]](graemlins/shake.gif)
![[Big Grin]](biggrin.gif)
Today my fatigue has been awful. ![[bonk]](graemlins/bonk.gif)
