Or do you know of those who have and I can search their entries? I have been in a w/c for about a year and am getting stronger with treatment and can finally do some weight-bearing.
Any wheelchair to walking buddies? Thanks.
Posted by hshbmom (Member # 9478) on :
My neice couldn't get out of bed when she was a teen, but is now on her feet & participating in life over 10 years later.
She had Lyme. I only assume she also had coinfections.
Posted by Aniek (Member # 5374) on :
There is a doctor who is in your state of Colorado who was in a wheelchair and had been diagnosed with ALS before Lyme. After IV Rocephin he no longer needed the wheelchair.
Posted by map1131 (Member # 2022) on :
WOW, there you go Ilene. I told you the other day you will get better. Now just find others and see how they got rid of the walker/wheel chairs.
Cave can probably give you some advice on what helped her.
Good post aliyalex.
Pam
Posted by lymemomtooo (Member # 5396) on :
There is a lady in our support group that was previously diagnosed with MS. After Lyme disease treatment she has gotten most of her life back. She was either in a wheel chair or close to the use of one.
Posted by Rianna (Member # 11038) on :
I was bed bound for 18 months needing 24 hour care after progressivly getting worse over 7 years of no diagnosis. It was suggested I could have LD and I tested positive.
After 14 months of treatment I am out of bed, I can drive to the Shops some days and can do my own house work now, albeit little bits. It has been a long hard road and I am told I have a long way to go but I have come so far, its still very difficult every day but to where I was its amazing.
Rianna
Posted by Rianna (Member # 11038) on :
JRachel11: First of all I want to send my hopes and prayers for your recovery.
Seizures - Are you taking or had Bartonella meds as seizures can be very much part of Bartonella.
I am sure many people here will reply to your post although I hope you do not mind but I have started a new topic to ask for stories of recovery. 'Recovery stories pls for severe Neuro Lyme Sufferer'
OK OK Im only doing Belly flops off the side -Jay-
Posted by Clarissa (Member # 4715) on :
Not a wheelchair inspired story...but still very inspiring:
My sister-in-law was going blind in one eye, having tremors, motor skill problems and was diagnosed with an early onset of MS (she was in her late 20's) by a top neurologist in Boston.
Coming from a Lyme family, my Mother got her to an LLMD and she tested positive for Lyme.
2 years on various orals and she totally recovered. She re-gained her vision and now, literally, runs marathons!
I'm talking the 26-mile kind. She's an inspiration to me!
Posted by David95928 (Member # 3521) on :
One of my students had an MS diagnosis and deteririaed to teh point of being in a wheelchair for about six months. She then was treated, got up an walked, and now is attending college full time.
Posted by Lymetoo (Member # 743) on :
Wow!! This is an inspiring thread!! Keep going, Aliyalex!! Posted by aliyalex (Member # 6976) on :
MAP especially thanks for PM-ing me. My computer died and I forgot I posted this. Wow. Thank you so much for all the support!
Talk about 2 steps forward and 1 back...I rolled down a hill and`shattered my femur 7 mos ago and a few days ago I mysteriously got a hailine fracture in my foot that I have been trying to weightbear on.
After my 2nd appt with Dr`K I stopped progressing. Then realized I could wiggle my toes. Now my bladder control is much better and I am putting weight on my legs` when I transfer.
I am having trouble standing with the walker, tho I know that is my next step.
This thread seems to be helpful to many, let's keep it going.
BTW, I was on tons`of abx including a PICC line and`only got worse. Dr K started me om aggreassive abx and I`was stiff as a board and couldnt detox. Now I am on cholestryamine and much more, but not abx.
That was helpful about tying knees together. I can hardly move my legs to push backwards. Anymore thoughts? Thanks.
Posted by CaliforniaLyme (Member # 7136) on :
We have had in our local group 2 people lose wheelchairs for MS Lyme- one for ALS Lyme and one lose a 3 headed cane- MS Lyme- all walking now- all normal now except 2 on maintenance abx-
Posted by aliyalex (Member # 6976) on :
DId anyone else have trouble opening Meg's link?
Posted by meg (Member # 22) on :
I double checked the link and it still works for me.
You can access this same thread at the top of the General Support Forum.....It's called Success Stories Posted by aliyalex (Member # 6976) on :
Very interesting link. Thanks Meg, I had lost the internet connection. Got it now.
Posted by njgirl14 (Member # 14174) on :
This thread is encouraging to me.
I am practically housebound and can barely walk with a walker. My legs are so weak and feel like jelly and I have a hard time just standing. I get very discouraged as I have gotten worse over the past 2 years since treating lyme. Of course all the questions from well meaning family about "why are you getting worse?" doesn't help my morale any either. I was dx with MS for 6 years before lyme dx.
In another thread Californialyme you said about ALS and getting worse with orals. I thought that was interesting. All the LLMDs that I have seen say they do not know why I keep getting worse. This is the first time I have heard anything like that, that would explain my situation even though it was not an ALS dx. I have been on IV a month now.
Do you have any more info CALyme or others? Thanks for listening.
Posted by oxygenbabe (Member # 5831) on :
NJ Girl maybe hyperbaric oxygen would help you regain muscular function.Do a search on this site or member boejr she is a nurse with a chamber who treats lymies in New Jersey.
Posted by njgirl14 (Member # 14174) on :
oxygenbabe - Is that Julia you are talking about? I talked to her a year ago and I will definately go to her when I do HBOT. She is about an hour from me. Right now I am treating for Babesia and I have heard conflicting info as to whether HBOT can make this worse. My LLMD thinks it does not. I am doing a detox IV treatment protocol now and can't afford both that and HBOT. HBOT is something I will try in the future though.
Posted by oxygenbabe (Member # 5831) on :
Yes it is Julia. Rest assured it will help you get stronger.
Posted by Parisa (Member # 10526) on :
njgirl14,
What about IVIG? Can you get a neurologist to recommend it?
Posted by njgirl14 (Member # 14174) on :
I have not investigated that yet. I need a new neuro - any recommendations?
Posted by aliyalex (Member # 6976) on :
Attempting to return to topic. Anymore stories for we late stage, chronic lymies?
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