I am writing hoping to hear some success stories and suggestions involving neuro-lyme.
I am 28, have had lyme symptoms for 6 years (4 years undiagnosed) and have been on med's for the last year and a half. I have been on Ketek seemingly forever and have reached the point with it where I feel like any potential benefit from that medication I've already received, so why continue with it?
While most of my pain related symptoms have improved, I still have chronic "nerve rumbling" from my shins down to my feet, I get random nerve zaps anywhere on the body a few times a day, and I have poor short term memory. My lower back has also been bothering me for the past week or so and am wondering if that's from weak or irritated nerve endings.
If anyone has any suggestions for me...new med's, supplements, diet, anything that would help I'd appreciate it. I see my Lyme doc this Thursday and want to go in there with info handy.
Thanks, Marc
Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
| IP: Logged |
These random nerve zaps, do they feel like someone is shocking you? I have them now and they are like every 10 seconds or so. What seemed to help yours?
I have just started treatment about 1 1/2 mo. ago w/my LLMD.
Thanks,
jloisu
[This message has been edited by jloisu (edited 29 August 2005).]
Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
| IP: Logged |
They have improved somewhat in terms of frequency with med's. Instead of them happening to me every 10 seconds as you're experiencing, I might get one bad zap every few hours. But yes, it feels exactly like an electrical shock sensation. It's odd because when I get one it's usually 2 places of my body that get zapped at the same instant.
Whenever I've had relapses, this is generally one of the first things that comes back with a vengeance, and when I am better the problem still exists but it is improved and more dormant.
Hope this helps.
Marc
Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Marc, Are you taking Vitamin B Complex and Vitamin B12? How about Magnesium? ALthough I am MUCH improved, I still get sensory twitches, and very painful small spasms. Generally these are either in my right deltoid or quadricep. Magnesium seems to be the key ingredient for keeping them at bay. I take a gram of Magnesium Sulfate IM about twice a week. All attemps to cut back have resulted in these returning. This is treatment mentioned by Dr. B in his treatment guidelines. In addition, he noted that lymies tend to become severely deficient in B vitamins. There is a controversy about this as Dr. D. in MA believes supplements envigorate the spirochetes. Most LLMD's it seems favor using supplements. A somewhat separate issue is that low B12 can cause degeneration of the spinal cord, even when blood tests show normal levels of B12. This is often first manifested by tingling in the extremities. As long as I keep up with my supplements, I am nearly asymptomatic. Hope this helps. David
Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Up for Marc.
Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Marc..have you considered co-infections?..Especially Bartonella. Might be something to consider..Or another neuro toxin such as mold contributing to lack of improvement and other problems.
Posts: 2360 | From SE PA | Registered: Mar 2004
| 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