Hello everyone. I was wondering how many others have had neuroborreliosis (primarily neuro symptoms like muscle twitching, neuropathy and muscle atrophy/weight loss) in the forum, very ALS like? I have had these symptoms for several years now, finally dx'd with positive western blot in 2009. I have had only oral antibiotics so far, with good reduction in muscle fasciculations/fatigue with doxy and flagyl. I am getting a PIC line and will be starting a IV cephalosporin tomorrow, and am concerned if this antibiotic will penetrate the central nervous system. Has anyone out there been cured of neuroborreliosis? Thanks for letting me reach out to you.
Posted by karenl (Member # 17753) on :
I would start reading the parasite posts, doxy and flagyl helped you. I wonder if you feel better with cepalosporine.If it is not getting better I would try doxy, tindamax,flagyl, alinia.
Doxy and flagyl helped me get rid of the ALS symptoms.
Posted by cht girl (Member # 26170) on :
Thanks Karenl, I will read the parasite posts. My preference would be to do IV flagyl or doxy, but the infectious disease MD I am working with ordered a cephalosporin. I plan on contacting him immediately if the cephalosporin does not appear to be working. My preference would have been IV flagyl or doxy but he seemed resistant to them? (cost, maybe?) Did you take doxy/flagyl orally or IV before your symptoms resolved? Are you symptom free? Thanks.
Posted by Pinelady (Member # 18524) on :
Yes there are several here at times that have a new life seemingly free of Lyme.
For most it was not quick and it was not easy.
There are lots of good books out of people who have defeated Lyme.
And several new ones...
Prayers.
Posted by KfromPA (Member # 30149) on :
Hi there. I have been through the ringer with the ALS like presentation of neurological Lyme implications after several confirmed positive Lyme tests over the years. First, to ease your mind, IV Rocephin has turned me around to near complete remission on two occasions to date. Problem is, the damn ticks love me and I have been reinfected twice (time to move to the city!).
Just went to see the neurologist again last week (after 5 years) since I was re-infected again in June of 2010 and my muscle problems have come back worse than ever (similar to yours). He said most emphatically that I do not have ALS nor do I need to worry about it. He would not even do another EMG as he said it would be a waste of both of our time and the system's money.
Anyway, I am likely headed back on IV to knock this out. Currently on oral Doxy and a bunch of supplements and just plodding along, kind of in neutral. So, for me, Rocephin has worked quite well. Although each time it was augmented with oral Zithromax. And I think the Zithromax was to aid in CNS penetration. Get better...
Posted by cht girl (Member # 26170) on :
Hi KfromPA, thanks so much for sharing your story with me/us. When you were in near complete remission, were you able to go off all antibiotics? Were you able to put on muscle mass? I'm sorry to hear that you were reinfected. I, too, have been bitten a few times since I was diagnosed, because I love the outdoors and hike my dogs most days off. I've been reading about the permethrin (which I will buy for my clothes) and have been using a nontoxic bug repellant to try to limit my exposure, etc...
Posted by 2young2die (Member # 25434) on :
KfromPA I was dxd with ALS at Yale last year but did really well on ceftriaxone for 9 months. I just lost my picc due to a staph infection and now I have gastritis so can't continue the it.
What changed the doctor's mind that you had ALS? All my symptoms including muscle wasting have come back full force since stopping the med. I'm so scared!
Posted by IckyTicky (Member # 21466) on :
I had "ALS-like" symptoms as well. I had the muscle fatigue and SEVERE muscle twitching all over my body, even my tongue had fasciculations. After about a year on oral abx (mono-therapy) the muscle twitches pretty much went away. I've been on tx for 3 years and am now off abx for the last 4 months and the muscle twitching is back.
I'm very neuro... hyper reflexes, clonus, involuntary limb movements, nystagmus, seizures, gosh my symptoms go on and on.
Most symptoms went away with treatment. But again, most are coming back since I stopped treatment. I sure wish I had an LLMD that would do IV therapy.
It's not ALS... it's absolutely Lyme related. I was also told I had MS and Lupus along the way too. It's all Lyme to me.
2young2die... if you truly had ALS you would not see improvement with abx treatment. Just my opinion from what I've read and been told by doctors. I think you'll have a long road ahead with your symptoms, but don't let the stress and fear of ALS hender your treatment. That kind of crippling fear made me so much worse off.
Posted by Caniggia (Member # 30479) on :
I also have muscle wasting, only place I know it is really happening is on my left foot, the muscle down there twitches all the time like it has it's own life. I don't really know what to do. I have a MRI in the upcoming month.
Posted by Rumigirl (Member # 15091) on :
cht girl,
If you are serious about getting well, there are two things you MUST do: get the very best LLMD you can find do absolutely everything to prevent getting rebitten (which includes no hiking, and managing your dog, so it doesn't reinfect you).
If you don't do both of those things 100% . . . you can forget about getting well. I don't mean to be mean, it's just the simple truth.