I post every so often in hopes of finding someone who had lost their balance due to lyme(totally....ie can't walk alone)but then recovered. If you are out there, I would love to hear your story. I am beginning to think this condition might be permanent and that makes me sad. Thanks.
Posted by duramater (Member # 6480) on :
When I had a recurrence in 92 (ish) I was so impaired neurologically, that I had in-home PT to help me re-learn to walk. Balance was a major issue and even when I returned to grad school, I was still staggering around (especially on those white/black alternating tile floors).
Anway, its fine now.
Posted by tothepoorhouse (Member # 8595) on :
I don't know if this will help....but last weekend, I went to Walmart and bought a cane.
I have to get over the I'm not young and strong anymore......and use of this will make me look old and frail.
I'm only 51......but I'd rather "look stupid" with an old person's cane than "be stupid", if you can wrap your arms around that.
My latest motto is....do whatever it is you need to do to take control. Posted by 5dana8 (Member # 7935) on :
Hi betsy Sorry to hear about the balance problems
Have you had treatment?
Posted by Carol B (Member # 9110) on :
Lost my job partly due to balance problems-too many falls-health center ran out of ice packs.
I thought about getting a cane-but hope it makes me look DISTINGUISHED rather than old and frail.
Truth? I actually thought about getting a walker. I was even tempted to ride one of those carts in the grocery store.
But I have just begun treatment-so hope is still part of my vocabulary. I've just gotten used to careening off walls and hearing "Don't Fall CB"
BOING in BALTO, Carol
Posted by betsy (Member # 7105) on :
Thanks you guys. I have 3 walkers and canes galore and use them 24/7....I would fall otherwise and I have had my share of broken bones and sprains.
Duramater.....do you think the PT brought your balance back or the meds??? Probably a combination. I have been on meds for 18 mos plus I have had "balance therapy" but it didn't help. Were you on meds for a long time???
Posted by duramater (Member # 6480) on :
It was the meds attacking the Bb infecting my CNS (I had a positive Bb spinal tap) that disrupted the infection and its symptoms (which caused the profound balance problem among other neurological manifestations). During and after drug-based treatment, PT was necessary as rehabilitation. Balance was a major hurdle to re-learning how to walk.
I was treated aggressively with IV antibiotics (vancomycin, then primaxin) and short courses of oral steroids to control allergic reactions/pre-existing asthma for 4-5 months at that particular time. I missed 9 months of grad school. Upon returning to school, I pulsed antibiotics for another few months until I ended up in the hospital for 3 weeks with a raging C. diff infection.
In those 9 months I went from being hospitalized with profound neurological and cardiac manifestations to home with 24 hour nursing care (one home care delivery dude told me when I got better that he thought they had brought me home to die) to home-based PT to back to grad school part time and then, a year later, finished my PhD walking up to the podium to be hooded under my own steam.
Since that time I've had two other major relapses (am in one now and the other was in '97).
Posted by bettyg (Member # 6147) on :
Betsy,
I've had balance/dizziness for the last 3-4 months daily. Never had this before. I hang onto the walls when I walk.
Started using a cane 4-6 weeks ago; sure helps on my degenerative arthritis hip ...24.7 pain. I can't straighten up when bending; excruciating pain hits me and doesn't release quickly.
Bettyg
Posted by char (Member # 8315) on :
Seems I have read here that Babesia can cause lack of equilibrium.
Hope it lessens up for you. Is it worse since you started treatment-possibly a herx?
Posted by hiker53 (Member # 6046) on :
I went to physical therapy for 8 weeks and the therapist really helped me with my balance problems. Unfortunately that was 2 years ago and I have relapsed from not doing the exercises at home.
I think physical therapy and keeping up the balance exercises at home might help. Hiker
Posted by islandgirl (Member # 5914) on :
Betsy, Lack of balance was one of my very first symptoms. It remains after almost 4 years.
all docs, including LLMD, neurologist and the infectous disease doc feels it is due to the many lesions in my cerebellum. These will likely stay because I have permanent damage there.
I feel I can cope better with balance and the other neuro/cognitive stuff because I understand more and know when to back off and rest.
Funny, all know and can see 40 lesions in brain, but NOT ONE DOCTOR can agree on the cause. I know it was first caused by spiroketes.
At this point, acknowledging and working with my limitations is improving me alot. That, along with periodic antibiotics, etc.
Keep the faith. We can do lots, even with damaged goods!!
Posted by betsy (Member # 7105) on :
Thank you Hiker and Island so much. I haven't had a MRI of my brain in two years....maybe I should have that done again. It was fine 2 years ago. And yes Hiker, I definitely think doing the exercises at home keeps us in tune. Thanks for responding and best of healing to you all! Betsy
Posted by david1097 (Member # 3662) on :
You can go for balance training at some physio clinics. My balance problems are complicated by lack of positional feedback from my extremities. This problem fluctuates but when it is bad I can stand up straight but actually be tilted (you see some drunk people do this). I have never gone for balance training but it was suggested. I have real problem with darkness, tilted or uneven floors as I make up for the lack of ba;ance with visual ques. It takes time but you get pretty good at it after a while.
The level of difficulty varies with cyclical pattern of the lyme flare ups and herxheimer reactions and it has been getting better with time.
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