I'm on my second month of abx. 1st doxy/rifampin, 2nd ceftin. Felt bad a lot, but never felt better. Fell and broke my kneecap, now it is healing and the rest of me is weak as can be. I have felt hope and faith...until now. I need some encouragement....please.
Posted by lou (Member # 81) on :
BTW, you were really bad off to begin with. Two months of treatment isn't going to do it, just be patient.
Posted by pippy (Member # 6005) on :
Ali, So sorry to hear about your kneecap and being so weak right now! That is difficult to say the least.
I have been reading "Coping With Lyme Disease" by Denise Lang and Dr. Leigner
There are lots of stories in it about people being very incapacitated, misdiagnosed with MS, ALS, etc and after many months of treatment they were able to get out of their wheelchairs.
lou is right...it takes time and patience. The patience of Job is needed.
It really is the pits to put it nicely, but give it a little more time.
The feeling bad is normal and part of getting better...I felt like jumping off a cliff every second when I first started abx....it feels much worse before it gets better...its truly a dark night of the soul when going through the first months of Lyme treatment! Scary as hell!
Come here as often as you can for support!
Posted by aliyalex (Member # 6976) on :
Lou and Pippy, thank you. I went to that link an hour ago, but I didn't realize it was longer than 1 page. It is 4. I will go back and read the other pages.
Also I will get that book you are reading by Lang and Leigner.
Patience. Very hard when you fall down and have to crawl across the room and climb up on a wooden chair. I am sure there are many people who have had to do this. I am just in one of those Dark Nights you talked about. Thanks.
Posted by Lymetoo (Member # 743) on :
Lyme treatment can take a VERY long time if you've had it a long time. Don't expect to be cured in a matter of months. Sorry.
You WILL get your health back, but you have to take good care of yourself and try not to get down. I know that's hard. I remember MANY dark days, weeks, months, years.
You can do it!
------------------ oops! Lymetutu
Posted by krazykt1 (Member # 3739) on :
Ali, I have been in a wheelchair/scooter since being on the right combo of abx 6 months ago. I am now walking around inside without holding the walls and furniture. (most of the time)
When I first started on this combo, I too crawled to and climbed into chairs, had fatigue like a heart attack victim, couldn't stand to wash my hair in shower or stand long enough to cook or do dishes.
Today I can do these things. It's taken 6 months, it's slow but I expect to get it all back. Hang in, it will come.
Posted by Areneli (Member # 6740) on :
The recovery is always bumpy. Hold on and don't loose your faith.
We all have been there.
Posted by aliyalex (Member # 6976) on :
Thank you so much. It has been a really bad week. My mother is being scanned for metatastic cancer on her brain, my son got busted for mushrooms (felony)during finals week in college, and I can'r seem to get around anymore without a wheelchair. It all seems to have come at once. Usually I have lots of faith. So much so that I can share it with others. Not so today. So today I needed it from you. Thank you for that and more.
Posted by Monica (Member # 224) on :
I am so sorry you are being tested to this extreme. The road back to health can be long and trying, but we mustn't give up. I need to tell myself that all the time.
I have done my share of crawling around on the floor.
A personal story (that I hope you won't find too personal):
Last December I was an overnight guest and the bed in which I slept wasn't on a frame so it wasn't far off the floor.
When I woke up my legs were so stiff and unresponsive that I couldn't pull myself upright using the nearby table. And I had to use the bathroom!!!
I crawled into the bathroom and tried desperately to hoist myself up -- on the bathtub, the toilet -- anything! No luck, getting more desperate with every passing second.
I had an accident on the bathroom rug. I felt like an untrained puppy. I was very upset and close to tears. I had to be picked up off the floor.
I think that was one of my darkest moments, but now I can actually look back and laugh.
I avoid low lying places and I'm using a walker, but I KNOW I will get better.
You will too.
Posted by aliyalex (Member # 6976) on :
Thanks Monica, I can very much relate. (Humbling, isn't it.) I appreciate your sharing. Ilene
Posted by EZ-E (Member # 6436) on :
Oh yeah Ilene! I was in misery after a relapse, & a fall in Feb.. As soon as I could i started standing, then walking..... It was serious pain in back & muscles, but I'm walkin decent now. Ya gotta expect muscle atrophy after 4-6 weeks in a wheelchair....
Posted by aliyalex (Member # 6976) on :
Thanks EZ.
I started PT yesterday. I went on crutches and drove nyself and left the wheelchair in the car. Yhat works for a little while, anyway.
Posted by EZ-E (Member # 6436) on :
Good Ilene! It'll come back for sure!!
Posted by treepatrol (Member # 4117) on :
I met a few at Dr office that were misdiagnosed with ALS and MS and the last I saw them one was walking the other was doing pretty darn good and was about to try soon he said that was last fall. I just recently started taking wife back for more treatment abx's . If I remember or see either one Ill let you know how there doing.
Posted by Lymeindunkirk (Member # 7118) on :
I'm interested in finding out WHY some of you are in a wheel chair? Are you in pain when you walk? Do your legs or back hurt?Are you just unable to move your legs? Can you be specific please.
I'm wondering because my lower back on the left side has been extremely painful for the last 4 days and no one seems to know why. I'm hoping that this doesn't mean I am getting worse.......
Posted by aliyalex (Member # 6976) on :
Lymein... I was dxed with MS 2 years ago and my legs just got weaker and weaker and my balance got worse, so I was falling a lot. Then I tripped over my shoes while I was carrying my laptop and broke my kneecap. During the recovery time I lost more strength. I just started PT.
It wasn.t from a painful back. It was slow progression of weakness for me. And sometimes not so slow.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by Lymeindunkirk: I'm interested in finding out WHY some of you are in a wheel chair? Are you in pain when you walk? Do your legs or back hurt?Are you just unable to move your legs? Can you be specific please.
I'm wondering because my lower back on the left side has been extremely painful for the last 4 days and no one seems to know why. I'm hoping that this doesn't mean I am getting worse.......
There in wheelchairs because the spirochetes eat up the mylene covering the nerve pathways and then they lose control of motor functions. I met a few that lost almost everything even speech eyesite etc.
Posted by Lymeindunkirk (Member # 7118) on :
If they eat the mylene can your body repair the nerve pathways by replacing it after killing off the spirochetes?
Posted by Monica (Member # 224) on :
The symptom I had that I had a very hard time with was weakness in my right leg. I was on and off abx for years.
A couple of months ago I started with a new doctor and am now on ketek and cedax. Have strength in my right leg, but ... terrible knee pain (which was an early symptom that went away), terrible balance issues. Started using a cane in September of 2003. "Graduated" to a walker right after starting ketek.
Why can't I walk? I think it's because 1) pain is very bad and 2) whether because of demylineation or something else, messages are not getting through to my legs from my brain.
oops!