posted
Starting this new thread per a recommendation from a poster.
Please - can anyone confirm these symptoms as Lyme related. I ask because we don't want to rule out any possible answers. This is the current situation with my 12 year old son. He had screaming leg pain about 10 days ago, hospitalized, now out but in a wheelchair.
Very specifically - 1) the weakness in his legs has persisted, even though the pain has mostly subsided. 2) the pain and weakness are both perfectly symmetrical (i.e., exactly the same places, intensity and duration in both legs) all the time. 3) from his hips-up and from his ankles-down, there is no problem... all symptoms are contained from his thighs through his calves.
We've heard from LL and non-LL doctors that this particular "presentation" is unusual. If anyone can confirm through experience that they've seen this combination of symptoms it will help us greatly.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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posted
I'm sorry I can't say I've ever heard this exact description of a problem before, although I can say I've had symmetrical pains from time to time.
Anyway, for one reason or another your description made a Web page I bookmarked awhile ago pop up in my mind, so I figured I'd share it with you:
posted
What antibiotics is he currently on, if any? Did this start after changing to another antibiotic?
Has he ever been checked for Mycoplasma in addition to Lyme? This mighty little organism can cause damage to the motor neurons. Mycoplasma is often associated with other tick borne infections.
This sounds like it could be an episode of transverse myelitis to me, which can be caused by a severe infection involving the spine.
Did they do an MRI to check for lesions?
Did they do a spinal tap while hospitalized? They are not necessary recommended for lyme but can pick up proteins that indicate damage to spinal chord or other organisms like mycoplasma.
Yes, lyme disease can cause weakness but the placement of the weakness in certain areas of the legs only does sound unusual. However, nothing with Lyme is unusual.
Keep searching for answers and don't accept that he will be like this forever.
Send me a pm if you want. I have a child about his age with Lyme.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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posted
I had a similar thing happen. All of the 1 through 3 specifics. My pain was more like a tetenus shot ache in both legs, extremely sensitive to even light touch, and also very hot. I also was very achey in every joint of my body.
I didn't need a wheelchair, but my legs haven't worked right since. I did have MRI and spinal tap, which were both normal, but I had also been on antibiotics for a short time when these tests were done.
I have only been "clinically diagnosed" with lyme. My tests never came back positive. I do recall scratching something from my head and had a sore spot for a couple weeks. My doctor is currently treating me with IV Rocphin. I am on week 6 and seeing improvement.
I am curious, did your son recieve any steroid for muscle weakness? The only reason I ask is that I had recieved a couple injections in my neck the morning my legs began to hurt.
I do agree with imanurse to keep searching and check into transverse myelitis. Sorry I can't be more help, I'm still looking for answers myself. I pray you will get answers soon.
Posts: 111 | From northeast Iowa | Registered: Oct 2006
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posted
Imanurse asked 2 questions that were both dead-on. My son had recently switched abx, and he also tested positive for a mycoplasma. Those were either very very good guesses or based on some knowledge that I'd really like to learn more about.
July - no, my son hadn't recieved any steroids. The only thing that might (or might not) have triggered the severity of the episode was strenous exercise. Because he hadn't been feeling well for a while he'd missed weeks of Tae Kwon Do class. Then, he was feeling better so attended a class. His legs went downhill fast afterwards.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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posted
Did he take a quinolone antibiotic? Just to rule out a reaction, because the symptoms are very common for that kind of antibiotics (cipro, levaquin, avelox).
Posts: 94 | From canada | Registered: Nov 2006
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posted
no, he never was on quinolone antibiotics. He was on biaxin, minocycline and plaqunil for 8 months. then 2 weeks before this latest episode he switched to doxycycline and omnicef.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi r3coolkids,
I'm so sorry that your son is in so much pain, I hope he feels better soon.
My son had very bad leg pain right after he was re-infected... enough pain to make him cry, he was tired, but could walk.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Hello,I am sorry for your sons pain.It is a horrible pain i have had it.I have had lyme for 5 years and my lyme is mostly neuro torment with little pain.The only pain i have had other than achey joints is the leg pain you have descibed.When i first got lyme I had unbearable leg pain,especially in both thighs for about two weeks and then it let up.Throughout the last five years the leg pain pops up every 6 months or so and again usually takes about 2 weeks to let up.I also have motor skill problems quite often in my legs and other muscles,my muscles are sluggish and weak at these times and are one step behind what my brain is telling them to do.Unfortunately the only thing i can tell you is that elevating my legs does give some relief,not much but some.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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It's been three weeks since the scary episode when my son couldn't move his legs. The original excrutiating pain is virtually all gone. In fact, he says there's less pain in his legs than there had been for months.
BUT - the weakness is still there big time. He's been through blood work out the wazoo, MRI and some kind of nerve sensitivity test. All results are coming back as "normal". My wife and I have a new theory that I'm hoping some of you could react to...
We know the pain in his legs had been around for months, then it flared up and really bashed him good. This happened around the time of a change in his abx. Our hypothesis is that the pain was certainly Lyme-induced, but the episode has resolved itself for now and hence all tests are normal. Question: is it possible that the lingering weakness is just a side-effect of the pain? In other words, if I had been beaten up over and over for months and then really took a huge beating it makes sense that my body would just say "enough" and shut down for a break.
Is this at all concievable? Or is it more likely that the weakness is itself a Lyme symptom rather than a side effect? Or does the question just split hairs too narrowly?
Posts: 16 | From Rhode Island | Registered: Dec 2006
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posted
can't really answer your question, but I have had severe weakness in my legs on a constant basis for the last 5 years.
Been in and out of a wheelchair, use a cane to walk.
It is finally starting to get somewhat better with abx
The weakness is painless and feels like I'm out of gas. I also get severe pain in my legs at night, but not all the time. This seems to cycle.
I do not believe there is any correlation between the pain and the weakness, other than both being caused by lyme.
MRI showed some disc issues, nothing more. Nerve conduction was "suspiscious" one time, and normal the next.
Assuming this was autoimmune (I had a pos ANA at one point) they put me on steroids. The steroids gave me a surge of energy for a couple of days (made me feel kind of ADD), but then crashed me to a point that my toes were paralyzed.
The only thing besides antibiotics that I feel has helped me is to insist on taking short walks a few times a day. I think that my muscles may have actually wasted if I behaved according to how I felt. So, if your son is up to walking a bit, I would encourage it.
good luck!
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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posted
oh, I wanted to mention that one reason I don't think the pain caused the weakness is that I also have breathing and swallowing weakness, both painless.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi,
I'm glad your son is not in as much pain.
My son had a lot of weakness in his legs, even as a toddler he never rode any kind of a bike, three wheeler, nothing like that.
By comparison my daughter was riding three wheelers when she was 2/12. So I know it's related to lyme somehow, IMHO.
I hope your son feels better soon.
Posts: 6638 | From Michigan | Registered: Jun 2001
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