posted
I've had neuro symptoms (clonus in both legs, numb/burning feet, l'hermitte's sign, fatigue, numbness/sensitivity all over both legs, weird feeling in fingers/hands, etc.) for almost a year. Haven't been officially dx'd w/Lyme, or anything else for that matter. (IgG had 4 positives and 2 IND) Is it possible to not have non-neuro symptoms with Lyme? I fear I have MS. Just curious (and extremely paranoid).
Posts: 23 | From wyoming | Registered: May 2006
| IP: Logged |
Post your test results -- bands -- here and someone can tell you more about them. Some bands are specific for Lyme disease -- can't come from anything else.
Hubby has 2 main groups of symptoms -- nausea/vomiting/dry heaves and tremors/myoclonus/seizure-like episodes.
G.I. symptoms may be from Bartonella and not Lyme -- can't say for sure.
If you were bitten by a tick, you may have Lyme disease and you could have additional coinfections such as Babesia, Bartonella and Anaplasma. This is why you need to see an LLMD (Lyme Literate Medical Doctor). These are specialists who know how to diagnose clinically (based on symptoms).
Many patients on this board were first diagnosed with MS and later found out they actually had Lyme and other tickborne illnesses. An MRI can look the same with Lyme and MS.
Ask all the questions you need to. Lots of friendly helpful people here.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
LostCityAgent
Unregistered
posted
I am sorry to hear about your symptom pathology. The feeling you describe in your hands in parethesias and is usually due to compression of a spinal nerve/s. As well, Lhermitte's sign is due to compression in the cervical spine. Though Lhermitte's sign is most common in MS it is also a known side effect of say a slipped disc. Your symptoms sound more to me like Neuroborreliosis, such as I have. I have all of your symptoms. If you go to a neurologist and he finds foci in your brain and spinal cord he may try to slap MS dx on you. Stay away. Go to a LD MD and get the right help. With the bands and the symptoms it seems to me that you are an LD patient with possible induced demyelination.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I have almost ALL neurological stuff and no joint pain to speak of. Like LOST, mine is "all in my head!"
I had an MS diagnosis. So did many of us on here, before figgerin' out we had lyme disease. It's a common misdiagnosis.
Where did you have your western blot run? IGeneX would be a good place.
You need a lyme-literate doctor to evaluate you for certain. If you have Lyme, a neurologist is not going to help you, and will try and talk you out of treating lyme, or call you nuts.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Yes, 99 percent neuro 1 percent heart
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Yes, my boyfriend has only neuro-symptoms. I made him get tested for Lyme only because I found lots of Bb in my own blood. His test came out identical to mine - lots of Lyme bugs, no Babesia or Ehrlichia.
His symptoms are facial ticks, tremors in hands and arms, increasing lack of sensitivity in tips of fingers, and some "visual disturbances".
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Hello, Prior to treatment, I was predominantly neurological with myoclonus several hours a day, blurred vision, shooting pains, numbness, etc. Had no arthritic pain to speak of. Most doctors thought I had MS but none of the MRI's or spinal taps would indicate that.
After I started long term antibiotic treatment for Lyme, I developed other "typical" Lyme symptoms like muscle aching. Us super-neuro Lyme patients are far more common that doctors realize, and I think most neurologist are not trained to pick up on the symptoms. (I know my FOUR neurologists didn't!)
I'm now about 90% improved a year and half into treatment with oral combinations and IM bicillin injections. (Was unable to get IV, but seemed to improve without it even with the severe neuro symptoms).
Hang in there. Take care, Ms. Myo
-------------------- Posts: 122 | From Texas | Registered: Jan 2005
| IP: Logged |
I hope it's possible to not have non-neuro symptoms with lyme because the ONLY symptoms I have had for 6 months are neuro related ( was diagnosed 6 months ago). I have some burning in my legs and a very heightened sense of sensitivity in my legs that hurts a lot when pants rub on my legs when i am walking.
I tested positive for lyme, bart and babs. I went through countless blood tests, spect scan, 3 mri's, 2 emgs, etc. etc. etc. Other than elevated cpk level (which we have yet to figure out why), the only other thing that came up were these 3 tick diseases.
Dr. P. has told me that treating neuro only symptoms is difficult and there's no guarantee. I continue to remain hopeful.
Please go find a good LLMD in your area!
~David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Yes, I 100% neuro symptoms.
With 4 IgG bands you have lyme, not MS. Get checked by an LLMD ASAP. Doctors that follow CDC criteria for making a diagnosis are not LLMD's.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I am almost 100% neuro. For very short time I had pain in knees, but barely a few weeks of joint symptoms.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Much more common in Europe for strictly neuro symptoms. They have a different strain of Borrelia over there. There are over 50 strains, hence the different "presentations", I would suspect.
The strain my sister has/had...did NOT effect her "thinking". She tested positive for lyme...the 1st 2 bands. Unfortunately by the time she found out...she had already been given steroids. It presented as severe arthritis.
She never had "foggy" thinking. Perhaps one of the many supplements protected her from that (ginkgo, maybe).
If the myelin (cholesterol) sheath around the nerves is being destroyed, you might want to check into the possibility of a salmonella infection, although it is now being seen as a co-infection in some lyme patients.
What is your current cholesterol level...LDL high, HDL low? Total high or low?
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
posted
I have neuro symptoms but I think I've had them for a long time.
I also have arthritis in one knee, which did make a stronger case for the Lyme diagnosis since my MDL test only showed one positive IgG band.
My worst and most amazing (in an awful way) symptom is the twitching in my face and ears--my left ear bounces up and down all the time.
I have a question for Truthfinder--did you and your boyfriend contract Lyme in Colorado? I ask because I'm pretty sure that's where I first got bit. We lived in Fort Collins and spent a lot of time outside.
I recently did some searching about Lyme in Colorado and come up with a different tick, Ixodes spinipalpis, and a different spirochete, B. bissettii. Perhaps this breed doesn't show up on Lyme tests.
Now we live in the Florida woods and have had ticks on the pets and in our house. Even though I've got dead Ixodes ticks saved to show to whoever cares! most people don't even realize there's Lyme Disease in Florida.
Then I show them my "magic" ear.
Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hi, Lynne - sorry - just saw your post....
It would not surprise me if you got your Lyme bugs in Colorado. My vet is finding Lyme in dogs here that have never been out of this area. We have it here, but most docs still don't believe it.
My personal opinion is that I got my Lyme in Colorado, either as a kid or in the last 22 years.
Neither I nor my boyfriend can be certain where we got our Lyme bugs. We have both had the larger-type ticks attached to us - primarily as kids - but neither of us ever had a rash. Boyfriend grew up in New Jersey, I grew up in Colorado, but moved around to other states that don't have any Lyme problem either (uh-huh), then moved back to Colorado 22 years ago.
I think you can drag the Lyme bug around a long time before you hit the magic collection of microbes, heavy metals, etc. and then you have a problem.
Yes, we do have B. bissetti, and in my particular county, I found where the CDC found a species in an abondoned prairie dog town that they determined "most closely resembled" B. parkeri. B. parkeri is associated with Relapsing Fever.
B. bissetti patients had clinical presentations ranging from "relatively benign illness to some severe afflictions", at least in Europe (Slovenia). So I don't think there's any question that it is a problem, just like Bb.
Igenex said that their test is specific for Bb and won't pick up any of the "European strains". Bowen never replied to my question.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
mine are almost exclusively neurological (apart from fatigue & neck ache): dysarthria (speech), double vision, bell's palsy, micrographia (handwriting), tinnitus, plus general problems with balance & co-ordination.
midway through my first antibiotic course, feel no improvement yet but it's early days. best, mark
Posts: 7 | From london, england | Registered: Feb 2006
| IP: Logged |
I just read your answer. Thanks for the info. I suspected that the tests DON'T catch B.bissettii!! From what I've been able to find, it's that much different than burgdorferi.
I really think I've had this since we lived in Colorado. Plus it's likely I've been re-exposed with the mega tick problem we had here. I've found Ixodes scapularis, so why couldn't the brown dog ticks have Borrelia? We had ticks hatching in our house for over a year before our poor dog died last year.
In fact, my husband found some eggs when he was painting one of our bedrooms last month.
My neuro symptoms are bad. Plus I don't think my doxy dose (200mg/day) is high enough to be helping. I've been on this dose since February 14th.
I saw my LLMD yesterday. His only remedy for the pain, twitching and depression, which I'm hoping is herxing and not continuing symptoms, is Benadryl or Allegra.
What a joke. I like this guy, but I can't do this much longer.
Posts: 353 | From Florida boonies | Registered: Nov 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!
![[spinning smile]](graemlins/spinsmile.gif)
Printer-friendly view of this topic