posted
Hi, I am an old lymey meaning I had it years ago, undignosed for 8 yrs, (1987 must have been bite by the tick, didn't know it, dignosed like in 1996 then treated for YEARS, pic lines & then oral, etc. Lyme is not active anymore. Did live up in northern virginia and that is most likely where I got bite. Question is this...does anyone or do you know of anyone like me who is not having active lyme anymore and is just dealing with all the problems that it must have caused, but didn't know about until YEARS later. It first started with problems in the feet, cramping for yrs & then moved up the legs, also looks like something is inside the legs trying to push out all over the legs especially after using them..i.e. walking, etc. Then as the last couple of years have past, cramping turned to severe spasms. The legs also twitch 24/7, I feel it but it does not hurt, heck have had for the last 3 yrs and sometimes have to really think are they twitching or not because I have become to accostomed to the feeling of the twitching!! Have abnormal emt with demylinations to the axon of the nerve. The head of the neruo dept. at mayo clinic here in florida has no idea what the heck it is but all toss it up to the lyme from years ago. It is getting severe and it has gotten to a point even if just everyday walking at work, home, etc. will cause that night to be a really bad night with the legs. It usually happens when you sit & try to relax the legs & especially at night when trying to sleep which never seems to happen anymore because of the legs. I faint due to the problems, they say from the pain, which could be true so am on heart meds to help my bp from bottoming out, which it does & I start to go down, but don't black out due to the meds. Had a positive tilt table test after only 7 minutes & was not having the spasms so I feel the autonomic system is affected but again no one knows what is going on. I really need to see if anyone has heard of these leg problems. They are super severe. I can have my heel go up in the air & my husband & I can not push it down until it is ready and the pain is beyond words & then the leg will kind of go into a twisting look, like everything is fighting each other inside the leg. Had a knee replaced last Oct. and would rather go through 6 more of those than go through these leg issues. Anyone that can answer this, I would greatly appreciate it. You can email me here which I still can't quite figure out this site or my home address at [email protected]. I did post months back for the 1st time & got an automated post telling me to not do this or do that, words too long, etc. That is not what I need!! Thank you, Kathi
Posts: 2 | From Jacksonville, Florida | Registered: Aug 2009
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
(changed to paragraphs, for those with vision problems)
====================================
Hi, I am an old lymey meaning I had it years ago, undignosed for 8 yrs, (1987 must have been bite by the tick, didn't know it, dignosed like in 1996 then treated for YEARS, pic lines & then oral, etc.
Lyme is not active anymore.
Did live up in northern virginia and that is most likely where I got bite.
Question is this...does anyone or do you know of anyone like me who is not having active lyme anymore and is just dealing with all the problems that it must have caused, but didn't know about until YEARS later.
It first started with problems in the feet, cramping for yrs & then moved up the legs, also looks like something is inside the legs trying to push out all over the legs especially after using them..i.e. walking, etc.
Then as the last couple of years have past, cramping turned to severe spasms.
The legs also twitch 24/7, I feel it but it does not hurt, heck have had for the last 3 yrs and sometimes have to really think are they twitching or not because I have become to accostomed to the feeling of the twitching!!
Have abnormal emt with demylinations to the axon of the nerve.
The head of the neruo dept. at mayo clinic here in florida has no idea what the heck it is but all toss it up to the lyme from years ago.
It is getting severe and it has gotten to a point even if just everyday walking at work, home, etc. will cause that night to be a really bad night with the legs.
It usually happens when you sit & try to relax the legs & especially at night when trying to sleep which never seems to happen anymore because of the legs.
I faint due to the problems, they say from the pain, which could be true so am on heart meds to help my bp from bottoming out, which it does & I start to go down, but don't black out due to the meds.
Had a positive tilt table test after only 7 minutes & was not having the spasms so I feel the autonomic system is affected but again no one knows what is going on.
I really need to see if anyone has heard of these leg problems. They are super severe.
I can have my heel go up in the air & my husband & I can not push it down until it is ready and the pain is beyond words & then the leg will kind of go into a twisting look, like everything is fighting each other inside the leg.
Had a knee replaced last Oct. and would rather go through 6 more of those than go through these leg issues.
Anyone that can answer this, I would greatly appreciate it.
You can email me here which I still can't quite figure out this site or my home address at [email protected].
I did post months back for the 1st time & got an automated post telling me to not do this or do that, words too long, etc. That is not what I need!!
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Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey KR...
Sorry your legs are bothering you. Those spasms can be very painful.
You've provided a good deal of information, which is great.. but I am not sure if you are still going to the Mayo Clinic or not.
If so... and you are still this bad.... maybe you would consider another place to go to get help?
In MY opinion... and I am not a doctor....
You probably need a better evaluation by someone who actually knows Lyme and the potential coinfections that could be involved.. and also knows how to treat them.
Your leg problems are VERY common with Lyme. Occasionally the cramping can be sparked on by a coinfection called Babesia.
Then again, it could be a lack of magnesium or lack of calcium problem too. If you want to test that theory... be sure to try one and not both combined.
If magnesium, for example, makes you worse... stop and then try calcium.
You said.. "Lyme is not active anymore."
Actually, that is rather hard to determine since there are no conclusive tests to prove it isn't.
Another reason for suggesting a professional opinion from someone who knows Lyme and tick borne coinfections.
No, am not at mayo anymore, head of the dept. said he could do no more for me because he has no idea what is going on but that it is not CIDP, which sure sounded like what was going on with the legs.
No other place locally to go to that has any idea about lyme, my lyme doc retired.
Have done the mag. & calcium, did not work, that was when another neuro doc thought it was just facsilations (spelled wrong I'm sure).
Yes, your right, I may have a co infection but before my very knowledgable lyme doc retired, he ran so many different tests and felt it was not active and no other co infection showed up. He did also test for the babesia. That is why they all believe this is something that the bacteria caused and is just showing up years later.
I know when I was originally tested yrs ago, it was inconclusive retest in 3 wks (because the bacteria is on a 3 wks cycle) and then the test came back weakly positive.
Lyme doc then did the urine antigin test and mine came back highest he had ever seen.
So I do know that tests are not reliable.
But when that is all you have to try to get someone to help you, there is not much left to do but come to sites like these to see if anyone has heard and or experiences different issues.
That is why I came here about the leg spasms.
You mentioned that these are common with lyme, can you go into more detail?
Anymore information you can give me specifically about the leg spasms would be greatly appreciated.
I am having a really hard time understanding this site and it took me FOREVER to try to find your post.
Couldn't even tell you how I found it, but will check back soon so see if you had anymore information for me.
In advance, I thank you.
Kathi Posts: 2 | From Jacksonville, Florida | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
My screaming leg cramps went away with treatment.
Hope you find a good LLMD to treat.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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