posted
I changed the title to hopefully get more responses. Thanks everyone who already responded!! *********************************************** I have a question for anyone who can't walk very well because of Lyme....
My son just started have troubles a few days ago. He is complaining of thigh muscle aches and weakness. He missed 2 days of school. Then he went today and he said he had to slide his feet to walk all day. Then he said that sometimes when he takes a step his leg quivers. I think this is mostly on steps when pressure is added. He also said sharp shooting pains.
He doesn't have his 1st LLMD appt until Tuesday. But I am concerned in the mean time!
Any ideas?
Thanks!
[ 03-13-2009, 12:52 AM: Message edited by: Amy C ]
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have this from time to time. I feel a weakness in my legs. They almost feel like they are made out of jello.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
LIfe got much more do able once I started using a power chair to move my body around.
I am still able to be on my feet but it is limiting.
Even being in the power chair is limiting due to weakness or pain.
This is such a tricky condition to figure out.
I too have times when I slide my feet to get from point A to point B.
Or I walk sideways for a bit and then turn the other way and walk...as the brain will really struggle to tell the legs to move forward.
Even the sideways thing is limited with the brain telling the legs to move.
Other times, I can walk normal...but it is still limiting.
My first experiment was someone using a wheel chair provided by Costco. It made life so much more do able.
It is tricky. I tried a cane and that didnt' seem to help me.
I rented a scooter before I knew the difference between a scooter and power chair.
The scooter did not work out well either and still does not work for me. Better than being on my feet but the arms and brain really struggle in a scooter.
Taking it slow and easy..strolling is good, but not in my nature so difficult for me..also limiting on how long I can do this.
I do better in a quiet environment.
Sounds, movement, trying to listen, people talking to me, etc seems to use up the brain so I have trouble when it comes to needing the brain to talk to my legs and move them.
Don't know if this helps or not.
I know we are all different on where we are and what we are able to do with this condition.
The time of day also seems to make a difference.
When I first came down sick, I used a golf cart to get to my classroom and lots of excedrin extra strength and coffee and provigil.
But, that did not last long. I would not recommend that.
A wheel chair did not work for me unless someone was pushing it as my arms are/were too weak.
I find if I recline or slouch for a while...I am able to walk for a short distance..depending on how much the brain is being used for other things..such as listening or processing, etc.
Sorry, things are just popping in my head.
I guess I am leaning towards trying a wheel chair to help him get around....perhpas not at school at first.
Someplace he could just give it a try and see if it makes life more do able.
it is tricky.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
i had this for a year to 2 years; they finally determine it was MUSCLES TWITCHING causing me almost to fall so i was hanging onto the walls for support, and NOPE, I DIDN'T DRINK ANYTHING BUT WATER THEN AND NOW!
good luck. it's not to be ignored. xox
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posted
My 16 year old daughter had weakness in her legs back on 7/31/08 that progressed to the point of very awkward walking, and now she has no strength at all in her lower extremities and has been in a wheelchair since January 09. Our lyme neurologist told us that she has bartonella. She has been going to physical therapy since October 08 to keep her muscles from atrophying and so far that hasn't happened. It is very upsetting that this hasn't been corrected yet, but we just started treating the bartonella this year. Her stomach cannot stand the oral meds any more, especially the ones she was on, so we are starting IV therapy next week. Unfortunately, we can only treat the lyme first. We are going back for a follow up with her pediatric lyme specialist on Monday and hope he can shed some light on what to do about the bart.
I would try getting your son to physical therapy. It is very painful for them to do, but it is almost necessary. It gets to the point where if they use a walker, they are injuring their backs because their gait is so awkward. This is why we decided to get her the wheelchair. Physical therapy will help him a lot.
I wish you luck. This has been such a long road.
Posts: 51 | From Connecticut | Registered: Sep 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Water Therapy helped me. I tried a regular pool, but found I needed the quiet and warmer water of the therapy pool at a local physical therapy place.
Again, I needed to limit how much I did as I needed enough umph to get out of the pool.
They did have a lift if I ever over did it to a point I was not able to get out on my own.
Hoping to start up again.
I had physical therapy before getting a dx.
I would over do it and have to crawl into the house from the car. not good.
but, I did learn that some things were do able for me...such as lying on my back and doing some exercises
Or the bicycle machine
Brain could move limbs easier with some thing than other things.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I have had this symptom come and go, wax and wane, as well. I never can be sure when it will happen, except I know if I overdo (mentally or physically), it is more likely to happen.
I am not a doctor and can only go by my personal experience, opinion, and what I have read, but I wouldn't make him push thorough this symptom personally. Especially not before he has been in treatent and gotten some of his health back.
There are Lyme Treatment Guidelines written by the prominent LLMD, Dr. Burrascano, that detail why exercise can be very bad for Lyme patients, until they are on the mend. Here are the guidelines - it is a pdf, so you can do a search within it for "exercise":
It sounds to me like he is getting too much activity and stimulus and needs to pare down his activity and rest as much as possible. It will help him heal quicker, the less he taxes himself. Then when he has proper treatment and starts to feel better he can do graded physical therapies and exercise.
Again, I am not a doctor, but that is what I would do. Please be sure to write down your concerns for his appointment, and discuss them w/your son too before hand, maybe he has questions he wants to ask of the LLMD as well.
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I am new here, but after much reading, I do have a theory about this weakness stuff:
If you consider that the Spirochete is shaped like a spiral pasta noodle, when they move around, the can go anywhere, thus you see the 100's if not 1000's of symptoms that can be brought on by this god awful disease.
Imagine, the spirochetes getting into the brain and central nervous system. This would account for all of the neurological problems people report.
Furthermore, if they get into the nerves themselves, you can probably get nerve conduction issues that result in all of the weakness people talk about.
This is why the above poster would have waxing and waning of his weakness. As the spirochetes move along, the nerves are then allowed to function like they previously did.
Personally, I just was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). Basically, when I go from sitting to standing, my Heart Rate doubles and I get out of breath. My newest symptom is Nausea. The Cardiologist told me that I'm probably getting over production of stomach acid due to the POTS which is part of a number of syndromes known as the Dysautonomias. The last thing he said we that no one knows what causes POTS, but it suspected to be of an unknown virus. I have verified this through the literature. I chuckled inside when he said this because I know it is Lyme causing this with me and once I kill it all off, I'm confident the POTS will also go away.
I have also experienced times where I feel like I want to cry, but for no reason.
Now take into account that your body is also trying to fend of the Spirochets and Co-Infections. Just this alone, can cause fatigue as if you had the flu.
I agree to not let your son overdue his activities and have him rest often, but at the same time, simple stretches and small amounts of activity, I would think would be beneficial so that his muscles don't atrophy or stiffen due to non-activity.
One last note, I have noticed that since I began treatment in September of 2008, many of the symptoms I have now, I never had, which makes you ask yourself, should I even treat this ?
Well, the simple answer from everything I have read is Yes. It appears that everyone gets worse before they get better.
Having said that, you don't know how long he has had it, and his bacterial load may be very high, hopefully not, being a child as some us adults don't know if we've had it all of our life, and would certainly be up against a much higher load than a child perhaps.
These are just my thoughts, but it does seem to make sense. I would only prepare you that things will seem to get much much worse before you start to see any improvement.
I can vouch for one thing. The neurological problems I had in the brain, were intense and scary as hell when I first started treatment, but these issues are now almost 100% gone, but the rest of my body is now affected much different than when I first started treating this horrible disease.
Try not to question every new symptoms, as you will drive yourself nuts. Just know that everything your son complains about is most likely related to the Lyme and co-infections.
Sorry to ramble on, again these are just my opinions and should not be taken as medical advice.
LymeTwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
The first symptom my 10 year old son had was weakness and then pain in his leg in late September 07. He was out of school a few weeks later and has not been able to return yet.
Any ideas? - Yes, make sure to be at that LLMD appointment no matter what happens, and treat aggressively as your LLMD will allow.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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