posted
Prior to starting Ceftin/Zithro combo for a flare up of Lyme (3 yr old infection still coming up current) I was having some stiffness in my hands. Then I started the antibiotics and weakness, twitching and achiness set in throughout my body, especially my left hand and arm (or maybe I just focus on that hand because that arm twitches the most and feels the most sore. The pains are migrating, but this weakness is not letting up and it's now been about three weeks... getting worried. Could this be ALS? Had a clean EMG last summer but these symptoms are new. Just how common is weakness with Lyme... or could it be the antibiotics causing it? Anybody?
Posts: 144 | From Connecticut | Registered: Sep 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hang in there Pauline. Often with lyme treatment the toxins from the bacteria dieing off make people feel worse before they feel better.
They call this a herxheimer reaction (a herx), when the treatment makes you feel bad. The good thing is when you feel rotten from it then you know it really is working. I'm sorry you are feeling so bad. It will pass. Let us know how things are going.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymeloco
Unregistered
posted
Pauline, I had weakness with my arms and legs and questioned ALS but within a few days it let up. I didn't even have energy to lift my arm or legs.
I'm doing well and with continued treatment so will you. Hang in there and be patient because eventually you'll feel better. In order to climb out of the hole you must deal with being in it. Stay positive even though it's difficult.
Most of us have experienced symtoms of ALS and don't have any of them now. Fight with all your might!
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've had that too. some days my legs were so weak i couldn't walk.
it's lessened with treatment....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Thanks guys, but this is three weeks now with weakness and no letting up. Beginning to doubt this is a herx. If it were just a few days or so I'd definitely chalk it up to herxing, but it's going on and on... I guess it can't be coincidence that it all started a few days after the ceftin/zithromax? starting to doubt my lyme test showing a "current infection" means anything since this all started three years ago. Seeing my doctor today... maybe he will lighten up on the antibiotics to see if that helps? Anxiety is kicking in Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
i didn't read all the posts...just caught something you said about not thinking it is a herx b/c it lasted for a few weeks
i herxed for mos last winter...i am sure it was a herx been there bfre
just my 2 cents
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
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cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
With ALS, you will see the muscle waisting before you really feel the weakness, and it doesn't happen as quick as you describe.
Posts: 16 | From Ga | Registered: Jul 2008
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posted
Just a question. Has anyone here heard that ALS is undiagnosed Lyme? Or that ALS is a symptom of Lyme? I had bad muscle wasting, weakness and twitching. I couldn't get myself up after falling because my arms were so weak. Before I got diagnosed I thought I had ALS.
If you research, there are docs and scientists that think that Lyme is actually responsible for diseases like ALS, MS, etc. They even have documentation of people in the last stages of ALS, on their deathbeds, getting tested and treated for Lyme and Recovering.
I can't say I am an expert or I know the science behind it but my LLMD believes that too. He has patients that were originally dxd with ALS.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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posted
Amy.. I'm 99% I have had Lyme for 15+ years. I have had almost all of the symptoms.
About this time last year. I pulled 2 ticks off me, and both bites swelled up, and turned red.
A short time later I started getting different symptoms. Fever, cramps, Ect.
I asked my Doc to run a Lyme test. It came back neg.
At the time. I didn't know how unreliable the test were, so I wrote off Lyme.
After visiting a handful of specialist. I was diagnosed with ALS about 3 months ago.
After reading how unreliable the Lyme test are. I made another appointment with my Doc, and brought up my concerns with the Lyme.
I figured even if there is a 1% chance that I was mis-diagnosed. I have to look into it.
It just seems strange to me that I have felt Lyme symptoms all these years, and all of a sudden I have ALS??
My doc agreed to go ahead and treat me for Lyme. What do I have to loose right?
As far as weakness. I don't really feel weak, but my muscles aren't quite as buff as they were a few months ago, but then again. I have been on heavy duty muscle relaxers for 3 months now.
My symptoms right now are some speech difficulties, and swallowing, but I have had the swallowing problems for several years.
I have daily spells of muscle twitching that comes in spurts. Lasting about 30 minutes or so.
I have been on Abx for only a week, so its kind of early to tell the effects, but it does seem like I'm feeling a little more energetic.
And I think I am feeling a little bit stronger.
I pray that I will fall into that category of mis-diagnoses.
I don't know for sure, but I think its very possible that untreated Lyme can turn to ALS.
Posts: 16 | From Ga | Registered: Jul 2008
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posted
Just saw my LLMD and told him all my symptoms. He said "that's good news". He said if I remained the same or did not have a worsening of symptoms he would be concerned and that three weeks is definitely not too long to be having a herx reaction which is what he thinks this is. Wants me to stay on the Ceftin/Zithromax bc he thinks it's working based on my lousy symptoms. Also said weakness, twitching, burning and aching muscles are common and nothing that alarms him - he has patients who are completely incapacitated... "difficulty walking up steps" with Lyme and treatment is normal he says and no cause for alarm. Told me to rest, take a good multivitamin, acidphillis and keep going on with the abxs. He also ran some bloodwork just to make sure my thyroid etc... wasn't off.
I do have days when I feel a little stronger. Yesterday was a BAD day.
Phil - I'm sure you've read this on ALS, but just in case: home.goulburn.net.au/~shack/mytheory.htm Good luck to you! Sounds like a no brainer that you have Lyme. Hope you feel some relief soon...or I guess feel worse... which according to my LLMD is great news!
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
Just my personal feelings here; but it is my thought that Lyme gives ALS patients hope. If I had ALS, I'd tell myself it were lyme as well.
Lyme is not ALS, and ALS is not Lyme. Nor is there any documentation of the sort. Doctors might feel this way to try and 'help' their patients in the best way they know how, but clearly they are two very different diseases. Maybe if anything, you have people who have a biological 'code' where they can only get lyme, or only get ALS, and I think a lot of people have this chemical makeup where they have this common 'gene' or cell set where they can get 'both' and in those people that can get both one often does.
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