posted
Hi All, My primary symptoms of late have been the classic neuro-Lyme stiff, muscle twitches, some muscle cramps/burning, some tingling, the fog, etc. The last couple of days I have felt really strange (but for only part of the day) and I wanted to see if anyone else has experienced this.
I feel generally sort of hyped up, jittery and anxious, and like my reflexes are hyped up, but at the same time I feel a bit low energy, and my legs feel like they're sort of numb (but not really), especially my quads/hamstrings). They're not weak, but they feel like they're weak. Almost like I don't have control over them, even though they're working just fine and I'm doing my day-to-day walking/climbing/sitting/standing with no trouble at all. They just feel really odd. It is very hard to describe.
Does this sound familiar to anyone? Thanks. Peace... Kenny
[ 22. October 2005, 03:16 PM: Message edited by: Kenny from PA ]
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Kenny I had the rubber legs a few months ago--I thought I was going to fall any second--never did tho- Lasted about 2 months then went away--
Changing symptoms is very common-- Yesterday I felt perty bad-- Today I feel OK --So Far-
The jitters can be caused by cafeine--it seams to effect us more-I changed from coffie to tea-- much better--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Thanks Jay, yeah, that sounds about right, "the rubber legs", that's an accurate term for it. But for me it seems to go hand in hand with this overall jittery, high anxiety, tightly wound feeling. Ugghhhhh. Can't wait to meet my LLMD next week! ;-) Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
what are you on?? haha ---after reading that it sounds like I mean illicit drugs.... I mean ABX.
I had the MAJOR MANIC jits and racing brain stuff while on mepron/zith. Could be your meds, and the lyme's reaction to them too!
Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Ht there, I'm not on any meds yet. This is pure Lyme. That's why I'm so freaked out. Actually, that's not entirely true. My acupuncturist treated me for Lyme (and assorted bacteria and viruses) and anxiety on Thursday and it's been since then that I've been a mess. And come to think of it I flared up after her treatment last week too. Anyway, it'a all Lyme, and perhaps an accupuncture herx. (?) Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
i constantly feel like my inner skin is trying to jump out of my body.Like someone smacked you in the fingers with a hammer,and then expects you to be normal.Twitches all day,everyday,magnesium helps very little.Does anyone else have this,ive been on meds 5 years.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
Kenny and 8Man... when you say twitches do you mean just muscle twitches that you can see under the skin and are painless or do you mean the slight involuntary movements. Minor ones like when you are falling asleep at night and your arm will move a little or your leg. (Not a major jerk)
I have both twitches and jerks at all times of the day. The jerks scare me more and I would love to know that others with Lyme have had and been treated for them and are fine now.
Kenny, I have the jello muscles, the tight achey muscles, (usually forearms and calves) and muscle weakness in general though am able to do all my tasks as you said. I do wonder if there will be a point that I won't be able to do a task.
Kenny- are you seeing Dr. J in Hermitage? If you are let me know what he says. I see him in less than three weeks. And from reading your posts- your symptoms are quite similar to mine. I know you've posted your concerns for ALS... I'm anxious to hear about your appt.
I remember that all to well from my very chronic (active) days. I called it the walking through mud sensation...because it feels like you spend your day trying to navigate obstacles under soupy mud. By the end of the day what little energy you have is spent just trying to get aroud.
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
HI all, While I have concerns about ALS I have read quite a bit about symptoms on this site and with my history of Lyme (4 previous confirmed dx and treatments, last in 10/04) and never having had more then 4 weeks of Abx it is HIGHLY likely that I have neuro lyme and HIGHLY unlikely that I have ALS, which is a VERY rare disease.
But as I experience new and odd(er) symptoms with this flareup I just keep wanting to know if others have experienced similar situations. Virtually every symptom I have described on this forum over the last several weeks has been met with someone (or several someone's) piping in to say "I've been there", "had it", "oh that was my first major symptom" "my worst symptom" etc.
There is such a huge array of symptoms caused by Lyme and Neuro Lyme that anything can happen. But as we all know, it feels REALLY good to know that you are not the only one.
Be well.... Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Accupuncture is what caused my Lyme to flare/relpase/get realllllly freakin bad in 2001. I had 2 treatments and I was wasted. I have NEVER been back to it. Seems to do more harm than good for ME.
Accupincturist explained it this way- normally accupuncture opens up the transmitters or whatever (it's been a long time since 2001) and allows problems, DIS-eases, etc, to flow through the body and leave. Lyme doesnt have a WAY to leave. It just flows more flreely causing a big old flare up in symptoms.
Anyone else have this experience?
Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Wow trails, that makes alot of sense to me. And the flareups have occurred right after my treatments. Thanks for the head's up. Every one stay well, and feel free to chime in. Peace... Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
Kenny, I have had over all symptoms of Lyme for the past year. All of them seem to come and go. Currently, I am feeling the same as you with the feeling that my legs are not there but yet they work. They feel heavy and weak as well.
I have had all the shooting pains, achy pains, variations (buzzing). I still have the constant twitching in the legs. I also have the jerks that have been referred to. Those also concern me more than the twitching. My toes move on their own and sometimes my fingers. I also have twitches in the face and hair line. Sometimes my chin will jerk.
I am becoming more concerned about ALS although my EMG/nerve testing a month ago only shows borderline slowing in the tibial of the right leg.
My lyme tests are not positive although I have some positive bands but of course not enough for the CDC criteria for being positive. I do have a lot of IND's. My out of town lyme doctor cannot say yet that I have lyme because of chronic sinus and ear problems. He is trying to clear that first. Meanwhile I am under the care of an ENT in my town and he has me taking Ketex for that. However, there is a month between appointments with him and I feel like I am not dealing with my REAL problem.
Has anybody else experienced chronic sinsus/ear and bronchial problems and had to clear those before knowing if they had Lyme?
Posts: 25 | From Crawfordville, Fl U.S. | Registered: Jul 2005
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posted
Hi Nancy, I have read post from several people on this site that stated that either chronic sinus or chronic ear problems were their first Lyme symptom.
I do not know how it fits in for me yet, but I had 4 very bad sinus infections last year, between the third and fourth was when I was doagnoesd with Lyme again.
Also, I have read that sinus problems are a chronic Lyme symptom on more than one reputable symptom list. Where they get this "Clear them up first and then deal with Lyme" thing I do not know. That does not make sense to me. Maybe you need to see another Lyme doc.
Best of luck. Be well, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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