posted
Does anyone else get this? My 9 year old son has had 3 episodes leg weakness since starting on flagyl. It's associated with a flare up in his other lyme symptoms.
It's really scary when it happens. He cannot weight bear but can move his limbs, sensation is intact and he can crawl around quite quickly. It does progress to his arms when he can only commando crawl but inbetween episodes he runs around like any any young boy. He says the weakness is around his knees which just seem to buckle when I try to support him.
The first time it happened, he couldn't walk for 9 days. Last time - only 5 days. His LLMD thought he may have Guillain Barre initially and he didn't recognised this as a lyme symptom.
Now it has happened 3 times, the LLMD thinks he is herxing, so presumably a good thing. However, he used to herx on a 27-28 day cycle and this has been 3 times in 6+ weeks although LLMD said a change in frequency could happen with a change in abx.
I just wonder if anyone else has experienced something like this. Presumably people with lyme who are wheelchair bound are there because of weakness. Is this a global weakness or just confined to certains muscle groups?
He has been on abx for 9 mths and was symptomatic for 6 mths prior to that. He has been on pulsed flagyl for about 10 weeks.
Please comment if you have anything to offer - makes me feel less alone over here in England Chiz
Posts: 67 | From UK | Registered: Oct 2006
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posted
I had a similar experience to Tindamax, which is supposed to be very similar to Flagyl.
In August I was unable to walk, or breath very well, and had difficulty swallowing at times.
I was put on 8 weeks of rocephin with leg weakness that got better and better. After the 8 weeks I was put on Adoxa(Doxy) again improving all along.
Next I was put on Tindamax by the second day my legs were buckling again, and I had this horrible drainage down the back of my throat. I was then put on Biaxan with the Tindamax.
Is your son on a abx with Flagyl?
My legs have started to get stronger again, but it was very frightening to go backwards like that.
Posts: 175 | From Pa | Registered: Aug 2006
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posted
Thanks Lisa. It is a comfort to know that others have had this symptom and also in relation to tindamax which works similarly to flagyl.
How long did you stay off the tindamax? Did it recur when you restarted the antibiotic. Do you think it was a herx? My son has just finished 3 days of flagyl. He has never had this symptom prior to starting flagyl.
I am just so frightened that the disease is progressing. This symptom is so visible. I can't see his headaches, stomach aches and joint pains but this is so hard to watch.
Thank you for including him in your prayers. Chiz
Posts: 67 | From UK | Registered: Oct 2006
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Before starting abx I started loosing strength in my legs - that really freaked me out, made me cry in my GP's office, begging to try abx. Which he did prescribe.
It lastet a couple of months before I started improving, with the regular flare when taking flagyl. One day I would walk for 15 minutes, the next day I couldn't get outside at all. My legs would just loose their strength.
Now, after 8 months on abx I rarely get leg weakness, and I am able to go for up to an hour's walk regularly, even uphill and getting my pulserate increasing.
I hope your son's herxing will improve soon.
take care, Sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Leg weakness has been a major symptom for me since I got Lyme back in 2003. In fact, it's my hips that are weak. If you don't have your hips, you can't walk.
I can stand and move the lower part of my legs but I very often can't propel myself forward. My brain tells my leg to step forward but it just stays put.
I just got off 6 weeks of cholestyramine and my walking has improved tremendously. It feels SO GOOD to walk normally! I almost always have a limp if I can walk at all.
My hips have been so weak in the past that even crawling hasn't been an option.
Good luck to your son - perhaps lots of detox will help.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Many many thanks to Katcon, LisaS, Siggy, Kendrick and lymeladyinNY for your responses. It has made such a huge difference to know that others have had this complaint.
Milo had an appt with our local paediatrician yesterday. The good news is there is no abnormality on examination. However, the duck thinks this is a psychosomatic problem.
I think the problem is that the duck doesn't understand lyme disease. So your comments have really buoyed me up today.
Milo still has the leg weakness for the 3rd consecutive day. Previously it has lasted 5-9 days so I hope and pray it goes soon. I have been so scared that it might become permanent but have been comforted by your experiences.
LymeladyinNY - interesting that it affected your hips. In Milo, it seems to be his knees which buckle - he can get around by doing bunny hops and crawling. He pointed out to me that he is much better than his grandpa who can only hobble around with a zimmer frame. So sweet
Bless all of you Chiz
Posts: 67 | From UK | Registered: Oct 2006
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