posted
I have not been dx for Lyme yet. I have had 2 Western Blot test. Both came back negative per the CDC guidelines. My symptoms are also like ALS symptoms. I have not been dx for that either. This has been going on since 10/04. I have constant twitching in my toes, and lower part of legs. Increasing twitching in other parts of the body. My face appearance has changed with twitching. I also have electric like pains that will stike unexpectantly all over. Does anyone else have those among their Lyme symptoms? I am really worried. Thank you for any reply.
Posts: 25 | From Crawfordville, Fl U.S. | Registered: Jul 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by 1332Nancy: I have not been dx for Lyme yet. I have had 2 Western Blot test. Both came back negative per the CDC guidelines. My symptoms are also like ALS symptoms. I have not been dx for that either. This has been going on since 10/04. I have constant twitching in my toes, and lower part of legs. Increasing twitching in other parts of the body. My face appearance has changed with twitching. I also have electric like pains that will stike unexpectantly all over. Does anyone else have those among their Lyme symptoms? I am really worried. Thank you for any reply.
Hi Nancy. Welcome to Lymenet! Your symptoms could be Lyme, or they could be something else. What kind of doctor are you seeing?
You say you had two Western blots and they came back negative "per the CDC standards." The CDC "standards" don't mean much, those are just for surveillance purposes. You can have just one positive band and have Lyme! But your doctor, if he's not a "Lyme Literate doctor", may not know that.
Another thing - labs differ greatly. Many labs won't do a very reliable job of a western blot. There's a post on here right now from a person with a negative western blot from Quest labs but a positive one from IGeneX, which is one of the best labs to have a western blot done.
Also, Lyme is a "clinical" diagnosis -- a good Lyme doctor will diagnose you based on your symptoms and history, tests are used for backup.
Let us know what lab did your tests and if you have them, let us know what bands were positive.
Don't give up!
Someone will be along with some links to study up on.
It seems overwhelming at first but will sort itself out.
ALS is something that is commonly diagnosed when Lyme is the real problem. Hope that is the case for you; don't let anyone but a real Lyme Literate doctor convince you otherwise!
Good luck!
Michelle M
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Nancy, I'm realizing your post nearly slipped off page 1 with no replies because it's titled 'twitching' -- most people probably didn't click there if they didn't think they had any info to share or offer about that.
However, if you block-copied it and reposted it with a title like "Lyme or ALS symptoms???" or "Newbie Needs Help Please" you'd likely get about a bazillion responses!
We'll all Lyme-brained around here so you gotta be kinda specific to get our attention but once you do, then we hop to it!
:-)
Michelle M
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Yes, I have had muscle twitching for 3 years now, it comes and goes and same with the electrical shocks that usually strike my legs at any given time which feels like someone is poking me with a sharp needle, which makes it hard to drive sometimes. I have had lyme for 3 years and still have this sensation along with pins & needles in arms/hands/legs/feet and neck pain, etc.Hope this helps to put your mind at ease that you are not going crazy, like I felt before being "clinically diagnosed" since my tests also came up negative.
Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
| IP: Logged |
posted
Is the twitching your only symptom or do you have others. What did you feel like leading up to October of 04. Did you see any evidence of a rash or a tick during the summer prior to October?
The CDC has guidelines for the ELISA and it is usually the first test given in non LLMD offices and if positive then the Western Blot.My LLMD's didn't bother with the ELISA as it doesn't test for lyme specific bands and is used for survailance, not dx anyway.
If your symptoms are progressively getting worse, find a LLMD now, make an appointment and get tested both clinically and via blood work. If you think you must see a neuro type, be sure to see the LLMD AT THE SAME TIME OR FIRST! You can waste a full year scheduling and waiting for a dx with a neuro. If it is lyme the earlier you start on abx the better.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Twitching can be caused by tons of things other than ALS. CDC guidelines are meaningless for the diagnosis of lyme disease, it the specific bands that count. Get to an LLMD and get tested. Get checked for co-infections also.
[This message has been edited by Mathias (edited 28 July 2005).]
posted
Yes, I've had this for 6+ years. I use Sinemet (rx only) to control it. Get Sinemet CR, which lasts longer than the original Sinemet. Posts: 252 | From NJ USA | Registered: Mar 2004
| IP: Logged |
posted
Magnesium glycinate and zinc may help the twitches. Magnesium sure helped mine!
Posts: 10207 | From Illinois | Registered: Aug 2004
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yes I had that in my fingers and tingling tip of nose use to go numb and stabbing nerve pain would start in butt then go to toe and at other times just like someone would be pinching me down deep. Dont worry about the neg WB's get LLMD and have him start treatment at high dose then a in a month test again that should free up antibodies or get a three day urine test through your Dr and get on say amoxicilin at 1500mg a day taking it at 500mg 3 x a day = 1500 and urine first day then 3 day then 5 day. As Igenx's procedures are. My wife first urine day one was negative the next two samples were highly positive.
But remember its a clinical treatment treat and watch for a herx in the next 3 or 4 months.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
posted
I had the twitching for many years. The change in your appearance (facial) sounds like it might be bell's palsy, a classic lyme symptom. You can see photographs and drawings of people with bell's palsy here. Please note that not everyone's bell's palsy is as noticeable as these depictions. You may just notice that something about your face doesn't "look normal."
Posts: 703 | From Almost Heaven | Registered: Aug 2004
| IP: Logged |
Lyme seems to cause a moderate to severe magnesium deficit, with an approx. 30% drop in stores. Unlike many bacteria that utilize iron, borrelia utilize magnesium.
paradoxically, magnesium is needed, in part to make antibodies, and the correct ones, at that.
some take magnesium supps.resulting in an initial increase in symptoms,which can be scary, depending on infectious load, but then these diminish in intensity and frequency.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi 1332Nancy,
I have twitching and electric like pains also, it all has gotten better with treatment. My lyme tests are all negative, only positive tests I have are for Babesia and Mycoplasma F.
I would see a LLMD as suggested above, they can atleast rule it out for you. Good luck.
quote:Originally posted by Michelle M: Nancy, I'm realizing your post nearly slipped off page 1 with no replies because it's titled 'twitching' -- most people probably didn't click there if they didn't think they had any info to share or offer about that.
However, if you block-copied it and reposted it with a title like "Lyme or ALS symptoms???" or "Newbie Needs Help Please" you'd likely get about a bazillion responses!
We'll all Lyme-brained around here so you gotta be kinda specific to get our attention but once you do, then we hop to it!
:-)
Michelle M
Thanks, yes I understand about the CDC testing being so narrow. It really presents a problem getting dx. I feel my primary is not considering my clinical background since he is not familiar with Lyme. Please see my re-post with new title "Lyme or ALS???" posted 8/1/05.
Posts: 25 | From Crawfordville, Fl U.S. | Registered: Jul 2005
| IP: Logged |
posted
Hi PQ, you mentioned that babesia utilizes magnesium. So shouldn't we not take magnesium supplements? Just wondering. My muscle twitching is out of control. Sadly.
Posts: 25 | Registered: Aug 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I did my share of twitching and I have LD.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic