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
Posted by Katcon (Member # 9812) on :
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.
Posted by chiz (Member # 10301) on :
He's on flagyl, zithromax and plaquinil. His LLMD has recommended adding ceftin as well.
The weakness has returned today - only after 4 days of remission.
Does anyone else have this?
Posted by LisaS (Member # 10581) on :
Im taking Zith and Omnicef and was doing okay. Then I added Tindamax which I understand is like Flagyll and I couldnt walk within two hours.
My legs got so weak. My LLMD told me to wait a little longer before I take it again. But even before I was diagnosed with Lyme this was one of
my symptoms that kept bringing me back to the Dr. I will say a prayer for your son. No child should have to go through this nightmare!
Posted by chiz (Member # 10301) on :
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
Posted by lymedesign (Member # 8791) on :
Bringing this up to the top for Chiz Posted by siggy (Member # 8654) on :
Sorry, didn't see this post.
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
Posted by Kendrick (Member # 10990) on :
Mine happened when working in sick building, stopped once I quite job, and came back after taking abx... doctor says it's a herx.
I made sure doctor was fully aware that I did not want to herx to death.
Some people use Cholestyramine to get rid of the neurotoxins produced. It is supposed to help a lot.
Posted by lymeladyinNY (Member # 10235) on :
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.
Posted by chiz (Member # 10301) on :
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
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