posted
Do any of you have neuro lyme? If so, what are your symptoms? Have you ruled our bart or do you have it too? What are the differences in symptoms in your experience?
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I knew I had neurological involvement even before I was diagnosed with Lyme.
I really thought I had a brain tumor.
Some of my symptoms that are neurological in nature include the following:
- difficulty swallowing
- difficulty finding words
- difficulty speaking
- loss of memory
- dizziness
- balance issues
- dysautonomia
I forgot to mention that I am a Speech Therapist who worked with neurologically
Impaired patients for years....
I also have joint pain and other symptoms.
Lucky me.
It is better overall, although I still have my days.
I was diagnosed with bartonella as well as babesia in addition to Lyme.
There is so much over lap in symptoms in Lyme and co-infections.
I am sure there are others who can give you more specific info.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I had mostly neuro lyme in 2005 when I got this.
Some of my symptoms were, Numbness, mostly on the right side, tingling, trouble swallowing, dizziness, sensitivity to light, couldnt feel myself talk, vivid vision, constantly hungry
Now I have interstitial cystitis, and all over body stiffness, joint pain , mostly in my pelvis. Constant hunger, slow moving bowels. Neck pain. Trouble sleeping alternating with fatigue.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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adamm
Unregistered
posted
I have Lyme and bart, and went neuro less than two
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yep, most of my symptoms are neuro now, and I also have Bart... or did. I've been treated for it but only for three months (I've heard sometimes it needs to be longer).
Some of my neuro symptoms:
-dizziness/wooziness -balance issues -vertigo -feeling spacey, "off", like floating on a cloud. -having bouts of depersonalization (feeling like watching self from outside of body, watching yourself in a movie) etc. -memory issues -saying one word when I meant another one. -saying things backwards or moving around letters in a sentence so when I say something it comes out all weird. -etc.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hubby has neuro problems. Trouble finding words, saying wrong words, etc. Don't know if he has/had Bart or not.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Anyone have backround music playing their heads 24/7 like me?
it's always the last song I hear on the radio, goes on and on and on....can't make it stop
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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tickbattler
Unregistered
posted
Thanks so much all! It appears to me that those of you with neuro symptoms almost all have bart in addition to lyme!
Cantgiveupyet and Boomerang...have you taken any coinfection tests for bart? Has your doctor mentioned that you could have it?
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi -- I have to put my two cents in....I have had two LLMDs tell me that bartonella is ubiquitous, that is, we all have it. It's 99% that your husband has it.
It's very nasty, hard to kill (may need to be treated several times), hard to test for, and the latest is that it is likely bartonella that makes Lyme patients relapse after extensive treatment.
Posts: 3528 | From US | Registered: Apr 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hi, nope....no coinfection testing.
Hubby's LLMD says that any more testing is just a waste of money....since the tests aren't specific anyway.
I do wonder about that??
Posts: 1366 | From Southeast | Registered: Sep 2005
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi, I was tested for Bart in 2004 and it came back negative. I think I was tested for one strain.
I haven't retested but my Bart symptoms showed up after 2 and a half years of treatment for Lyme.
My rash isn't the typical Bart rash but looks more like ringworm.
The more taletell signs for me are the vibrating feeling, severe anxiety with fatigue and subcutaneous nodules that I have in the back of my thighs, shins and upper arms, insomnia and pain in the bottom of my feet.
Very different symptoms than Neurolyme.
Hope this helps.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
I am positive for Bart on IGG and have the following current symptoms:
-burning/tingling neuropathic pain mostly in my legs, but also in arms -bodywide muscle twitching -vibration feeling in feet
I also have irritability, restlessness etc., but consider these symptoms minor compared to the physical pain. I have typical bart stretchmarks pretty much everywhere except my head, neck and lower legs.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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quote:Originally posted by mikej2323: How many of you got the red striae, or stretch marks that is supposed to be associated with Bart? If so, was it on the abdomen or other places?
Hi, I have the 'stretch marks' on my mid-back, as well as the rash 'aklnwlf' mentioned, looking like ringworm.
I've been dx'd with Bartonella through FRY IgG, and my symptoms are mostly cognitive and of course extreme fatigue.
Posts: 85 | From Texas | Registered: Dec 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
A good LLMD will now by just reading your history, talking to you and examining you if you have Bart or no, My LLMD says its responsable for most of the Neuro Symptoms he see's. Testing is inaccurate and you dont often even have any rashes until your given levaquin of similar.
Very good Rianna, this is also what I suspect, since I have weird neurostuff like muscle twitching and myoclonus left when pain and joint stuff has resolved from lyme abx.
Think many people who do not get well have bart as well and needto address that problem even though it does not show up in blood tests.
Posts: 347 | From sweden | Registered: Feb 2008
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YES! The music drives me crazy. So glad to know it isn't just me...
I also have "olfactory hallucinations", where I smell things that simply are not there. And weird sensations with my mouth, like feeling that my teeth are loose and about to fall out, even though they aren't. The dentist is puzzled and can find no explanation, other than "it must be neurological".
Posts: 220 | From central TX | Registered: Jun 2005
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