3 or so years ago, I got sick with flu like symptoms after activity outdoors. I did have many mosquito bites, but recall no tics or rashes. I figured it was either a coincidence or something carried in the misquotes. Took only a few days to completey recover and felt perfectly fine after that.
I forget exactly when, not sure if it was before after the mysterious illness, I stared developing very fine twitches or fasciculation. They were not very bothersome and I paid little attention to them
However, just about 2 years ago I developed facial nerve issues, and it has since then taken over my life. It stared on one side as a light burning pulsating sensation; it has since become bilateral (though not as intense on the other side). MRI, CT and neurological all came back clear. Blood test all normal (Mag; b12 etc) except for a Low MCV and low iorn level, which doesn't really point to anything.
What makes me think it isn't Lyme is I have not fatigue or weakness as many describe. Is it possible that Lyme can just induce Nero symptoms, specifically facial nerve involvement and twitching without fatigue or muscle pain? Anyone with any experiences? I plan on getting tested just in case but not sure how much stock to put into it.
Thank You
Posts: 4 | From Cleveland, OH | Registered: Aug 2008
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I am almost all neuro. Mine started with a weird throbbing in the right side of my neck. I always felt very aware of the side of my neck, then it turned into burning stabbing pains in my right side, which turned into all over my neck, but it's always more prominent on the right side. Then my skin on my neck felt fiery on top of those deep stabbing pains that I felt where in between my skin and my trachea. At the same time I noticed a spot on the right side of my ribcage that felt "weird", kind of like my neck.
Then I got the twitches and jerks. It scared me really bad. I get facial ones that aren't noticeable to the people but I feel them. Then I get full leg jumps, full body jumps online when I am falling asleep, or sometimes just little tiny finger and foot ones.
After that, my nerve pain (all different and weird, hard to explain in nature - but enough to almost completely take out every once of joy out of my life) has spread out but almost all stays in my upper half for now.
I wouldn't consider myself overly fatigued. I always wonder if I didn't have a 2 year old to chase after if my mind would "let" me. I am not weak. I am on I.V. therapy now and this is the first time that I've felt real fatigue.
I've gotten a TON of mosquito bites in Swamp, FL. U.S.A. but no known tick bite. I know when I got a "weird bite" and that was Dec/Jan. Followed by lymph node swelling.
By March, my neck started hurting.
My life has not been the same sense.
I tested for the first time in April for Lyme, came back Neg, only band 41. Tested again in June, came back Positive, bands 23 and 41. Did Igenex testing through an LLMD and got Positive results as well.
My symptoms flared when I was put on I.V. antibiotics which I've learned is a good sign....unfortunately. But, it was only with I.V. antibiotics that I had any kind of reaction whatsoever. I did doxy twice and amoxy once and nothing helped.
I would go try and see an LLMD. It's costly but I would not want this crap to be dancing around in my body causing more and more damage for any longer. I do not want permanent damage to my Neuro system. I am already afraid even after 9 months there might be some.
I've been checked out with MRIs, other blood work, etc. All normal.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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It's possible...worth doing an Igenex western blot. A good LLMD will check for many other things besides Lyme/coinfections such as Chlamydia, Mycoplasma, viruses (EBV, CMV, HHVs), candida and heavy metals.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I also rarely have pain. Most of my symptoms are also neuro, which can be just as horrible as chronic pain.
-------------------- 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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If theres one thing Ive learned about lyme through this long ordeal, its that anything is possible. Ive got limited arthritis (just on certain days), but I have the nasty neuro stuff every single day (headaches, burning scalp, eye flare ups, tingling, brain fog, mood swings, etc, etc..). Lyme likes to change, move, mutate, confuse, and **** us off.. Id recommend getting tested because if it is neuro lyme, its not going to get any better without treatment...
Posts: 514 | From . | Registered: Apr 2008
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I too have no pain, but huge brain fog, dizziness, tingling, twitching. For months I was certain it couldn't be lyme for that reason. I am now pursuing it.
Can you tell me which co-infections are most likely to cause brain/cognitive problems?
I want to be prepared when I talk to the doctor again.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
Thanks for the replies and support! This seem to be a very active and caring community forum. My best to everyone here, hope one day I can contribute positively as well
I did some searches on here and it seems a few have Trigeminal Neuralgia. Many seem to have other facial nerve problems (esp. palsy). My pain is more "atypical facial pain", but I will get it checked out since there seems to be come correlation.
As for other symptoms, i do have an increase in floaters but i got that checked out and i have a retinal tear (doubt that could be Lyme related). I do get a palpitation esque feeling of blood pulsing through my veins, especially when i lay down, i can feel my pulse everywhere. I could deal with this the twitching, the facial pain is whats mainly driving me insane as it's is 24/7
I called the one LLMD around here and am in the process of making an appointment, but the office says they would like my blood results faxed. I only had the basic full blood test done, no Lyme testing as of yet.
Should I bother with getting a standard test done through my PCP's office or wait for an appointment's with the LLMD to do testing? I'm thinking the LLMD woudl know what lab's is best and what to test for.
Thanks Again,
Posts: 4 | From Cleveland, OH | Registered: Aug 2008
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