posted
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.
Posts: 143 | From Louisville KY | Registered: May 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
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.
Posts: 1834 | From US | Registered: Oct 2008
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posted
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.
Posts: 143 | From Louisville KY | Registered: May 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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.
-------------------- 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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posted
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...
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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posted
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...
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
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!
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
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.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
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.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
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