posted
i am so confused, frustrated, scared! I was diagnosed with Lyme almost exactly one year ago. I had neck pain, jaw pain, extreme head ache, and the rash. They gave me 3 weeks Dioxycycline. In that time I developed Bell's Palsy and PVC's...fun!
I got better, but never returned to feeling like my old self. I had more headaches than I used to, and the quality and pain was just different. My face has not yet returned to normal, and I am waaayy more tired than I ever used to be.
Last week I went on a cruise with my family. while on that trip I again developed Bell's Palsy and Migraine headaches. Since returning (5 days ago) i have had debilitating vertigo...which I have NEVER had before. I wake up several times in the night thinking the bed is flipping over. I am also having cognitive difficulty. I told my fiancee I feel like there is sludge in my brain. I feel like people are looking at me like I'm crazy because it sometimes takes me longer than normal to comprehend what they are saying.
I'm not sure if this is Lyme...or boat motion? there are some disorders that can result from prolonged time on a boat...though this seems more severe than what a 5 night cruise warrants.
If it is Lyme..I'm concerned about getting treatment. I posted in the find a doc section about my location and an MD i am waiting for a return call from....
has anybody else had neuro symptoms? i have never believed that my Lyme is 100% gone. Maybe the trip was too much for my body to handle and it has taken over again???
i just don't know..all i know is that this is not me...this is not how I am...
ugh!
Posts: 17 | From Boston, MA | Registered: May 2010
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But I have the dizziness and it is from Lyme and co. The description of the symptoms sure reads the same.
The other symptoms are suspicious, especially since you felt like you never completely recovered after the first bout.
Posts: 819 | From East Coast | Registered: Apr 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
it is Lyme!!! get to a TRUE LLMD. That's what happened to me (minus the Cruise) but I used to say there were 4ft wave swells the training room. (I was dogtrainer/obedience instructor.)
Mainstream docs said MS...17 yrs before finding a LLMD.
Vertgo/headaches, noise sensetivity were constant until treated for Lyme.
BTW Bell's Palsy means it is in the CNS
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
same for me....i described it exactly like being on a boat with terrible headaches....couldnt stand noise, watch tv anything like that was awful......neuros kept saying migriane with vertigo or vestibular migriane......kept putting me in hospital for migraine treatments....until my pcp tested me for lyme and it came back positive........there i had my answer ....its a horrible thing.....but it is related to lyme and coinfections.......please see an LLMD.......it doesnt go away on its own..............good luck
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Find a llmd. There are alot of routes to take to get rid of this, of at least make it dormant. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Besides neuro, what other symptoms might you have. Bone pain, unexplained fevers, occasional gasping for breath, night sweats, anxiety, ??.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Also, you should probably request a list of LLMD's in your area and see one. Also read on Dr. B's outline of LD.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi...all my symptoms are neuro. And your balance issues are similar to mine.
In March I had Labyrinthitis, an inner ear infection / inflammation caused by my Lyme...only I didn't know I had Lyme then. Your symptoms sound familiar. I think you still have Lyme again.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Agree. DO find a GOOD LLMD soon. I have what is called "late stage neuro lyme disease" because I have the same awful symptoms.
When I roll over in bed the whole room spins around. I feel like I have a hangover but cannot remember the party!
Years ago the IV antibiotics stopped the neuro symptoms and now the Bicillin shots are helping. My speech is returning to normal. Still dizzy, but not as bad.
PM me for ideas to fix migraines.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
i don't have any other sxs except neuro. i'm debating if it's lyme or not...i know that bell's palsy inflammation can last for up to three years after the initial infection, and i did just go on a cruise and get see sick, which would increase inflammation in my body in general...
i'm going to wait another week and then start calling the mds that have been recommended if the sxs do not subside...
thanks for the input! i'm just not sure what it is, yet...
Posts: 17 | From Boston, MA | Registered: May 2010
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posted
should add...i have an appt. set up for three weeks from now...the soonest i could get in..in case these sxs don't go away...i don't know if it's vertigo from the boat...or if travelling was too much for my immune system and it allowed the lyme to take control again...so frustrating because i've generally been feeling better...even ran a half marathon two months ago!!
the thing i don't like, though, is that the LLMDs don't take insurance. it really makes me question what they are doing...i am an RN and work in the medical field, and that really causes me to second guess about the courses of treatment..
did anybody else have these hesitations?? what do we really know about these drs??
Posts: 17 | From Boston, MA | Registered: May 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You are being FOOLISH. " don't have any other sxs except neuro."
Which means the buggers are in your BRAIN & CENTRAL NERVOUS SYSTEM. Of Course you're "not sure what it is" since you haven't gone to the LLMD yet.
I editted this post since you posted you have appt. in three weeks. What I wrote wasn't fitting to your newer post.Posts: 2675 | From ct, usa | Registered: Jan 2004
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Sorry if some here are being harsh. I am a newbie as well and it is normal to question everything at first.
LLMD's don't take insurance because they spend an inordinate amount of time with their patients as is needed when treating Lyme. They see maybe 8-12 patients / day as opposed to 40+. There is nothing shady about a good LLMD. They are worth their weight in gold.
As an RN, you should know that the mainstream medical community doesn't know jack about Lyme. They think they do...but they don't.
I do encourage you to go to an LLMD ASAP and get evaluated. Yes..you could have mal de barquement syndrome..but that wound't explain the bells palsey.
I theorize you have had a relapse of Lyme and need further treatment. Of course, I'm not a doctor. But your symptoms are similar. Dizziness / balance / vision were my worst problems.
Good luck!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
that's true...i don't think mal de debarquement would explain the bell's palsy. june 16 was the soonest i could get into a lyme doc in my area. i'm on the cancellation list in case anything pops up sooner...
i've just started reading about the controversy over lyme, and it's so crazy! really scary for people like us who have to theorize and research and find mds with little guidance...or with people looking at us like we're crazy.
the vertigo is weird. it comes and goes. this morning i felt fine, then around 30 min ago it came on full force again...i tried taking dramamine, but that irritated the PVCs that Lyme initally gave to me...so now i don't really want to try anything else without discussing it with an md.
i went to the ed for the pvcs initially, i was having 10-12 per minute and all they did was tell me they're not harmful...what??? you have your heart beating like that and then look me in the eyes and tell me it's not a problem!
so frustrating. i know i am probably in denial, and should go get checked out. i'll keep my appt. on the 16th and hope for the best.
oh...and i'm chalking the angry reponses up to lyme brain Posts: 17 | From Boston, MA | Registered: May 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Naw, wasn't angry or lymebrain, just so worried when I hear neuro symptoms because it means so much damage has ALREADY been done.
Faster the proper treatment the better the outcome.
Been through 17yrs listening to docs that were WRONG.
It took 6yrs of heavy oral anti-microbials, tons of supplements & 4 months of IV Tigecyl to get to this point.
Now dealing with the damage repairs.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
what happened with your sxs? did they just suddenly reappear? what did you experience?
it's very hard going through this alone...sometimes i wonder if i'm just making stuff up about my body, but i do know how i used to feel.
Posts: 17 | From Boston, MA | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
DMC...I'm told that neuro symptoms don't always mean damage has ALREADY been done. Even Dr. B says that abnormal brain spects return to normal with proper treatment.
For me, most of my symptoms are eye/ear with an abnormal brain spect. But I've only had this for 1-2 years max and didn't have symptoms until the past 4-6 months.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
DMC..one other question. What was your CD-57 value? I was just curious.
Mine came back last week at 84. Not great, but above 60. I'm hoping I can kick this once completely along with co-infections.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
My CDC was a 9. Went to 19 then back down to 12. Haven't had another one in couple yrs.
I think the neuro symptoms Lymechick is talking about is the CNS re: Bell's palsy, vertigo MS type...not just the cognitive.
The MS type is DAMAGE in the brain, nervous system that may not fully recover if not caught early.
Brain Spects measure blood flow at the time which is cognitive function not nerve function.
I'm dealing with trying to repair & retrain this nerve function damage now.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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