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Old 08-27-2007, 05:08 PM   #1
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Join Date: Feb 2007
Location: Toronto, ON.,Canada
Posts: 9
Paulette Paulin HB User
Please HELP...Weirder than weird!and weirder yet...

hi everyone.
I am a 53 year old woman . in Ontario canada
I was bitten by a tick in Tennesse 10 years ago. Two weeks laterr I had all the symptoms of Lyme disease except the rash., including bell's palsy and a very stiff neck . I was tested twice,but it was negative.I recovered and was doing ok , except my once photographic memory was toast.I was foggy , very forgetful and was afraid I was getting Alzheimer's.,
.Then....about three years ago , I came down with ACUTE .radiculopathy along with fevers ,allodynia, buzzing sensations. numbness tingling incredibly stiff and swollen neck,sweats diarrhea, tachycardia, panic attacks in the night on the left side that was the nightmare from hell .I was terrified .and nearly out of my mind.Noone could explain it. The WEIRD THING is , as time went on, I discovered at least eight other people in my same area of town who had the EXACT same Horrific radicculpathy,etc the same weeK!!! including a whole family!!!
.After about seven weeks and alot of prayer it was nearly gone , when WHAMMO !! the pain came back ,only this time ALL OVER MY BODY!!!.. Even my nipples hurt! Completely unpredictable MIGRATING PAINS OF 57 VARIETIES ANYWHERE AND EVERYWHERE.Truly BIZZArre it has since died down alot but never completely gone. I was testeed a THIRD time for Lyme ..still negative.
i work full time and laugh and enjoy life..My best days are nearly pain free.Thank God, my worst days can be quite unpleasant..
The latest chapter ...I am losing motor function in the lower half of my body. Stumbling constantly and nearly falling often. I can't run ,go up stairs or down and cant get up from a seated position without help .My knees buckle all the time and my muscles spazz alot.I am very stiff any time I do stand up for a couple of minutes .I started to twitch in arms and face. My reflexes are abnormal.as well. I see a neurologist on Wedesday.needlessto say I am nervous about it. Does
HAs anyone else out there experience these truly BIZZARRE and maddening symptoms?
Is it possible that The radiculopathy episode actually was a new infection.? A strain that is transmissable person to person? What's th likelyhood that 9 people would come down with this uncommon thing the same week?
If it was , Was it Lymre or something else? West Nile?
if a person is reinfected a second or third time, does the body react more strongly to the bacteria and so you get a nastier version of LYME? as happens with Dengue Fever? ny ideas?
What's going on with me now? is it Lyme rearing yet another ugly head or is it something else?
And of course , WHAT CAN I DO ABOUT IT?
I am allergic to most NSAIDS ,and some antibiotics.as well as Flagyl.and most narcotics dont work for me. so I live without drugs and take herbs for pain which has made it manageable so far.
Please if anyone can give me any ideas of what is going on .
What and how much do I tell my neurologist on Wednesday.?
If I say I think it's Lyme He just might shut down on me and dismiss me as somone with a monomania.and not take this latest development seriously. If I dont tell him ,he will lekely misdiagnose me with some other nasty thing a i will not get treated properly.and end up drooling in a

Thanks and better health to all
PJP.

 
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Old 08-27-2007, 05:26 PM   #2
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Join Date: Jul 2007
Location: FL
Posts: 43
jenillumine HB User
Re: Please HELP...Weirder than weird!and weirder yet...

Quote:
Originally Posted by Paulette Paulin View Post
hi everyone.
I am a 53 year old woman . in Ontario canada
I was bitten by a tick in Tennesse 10 years ago. Two weeks laterr I had all the symptoms of Lyme disease except the rash., including bell's palsy and a very stiff neck . I was tested twice,but it was negative.I recovered and was doing ok , except my once photographic memory was toast.I was foggy , very forgetful and was afraid I was getting Alzheimer's.,
.Then....about three years ago , I came down with ACUTE .radiculopathy along with fevers ,allodynia, buzzing sensations. numbness tingling incredibly stiff and swollen neck,sweats diarrhea, tachycardia, panic attacks in the night on the left side that was the nightmare from hell .I was terrified .and nearly out of my mind.Noone could explain it. The WEIRD THING is , as time went on, I discovered at least eight other people in my same area of town who had the EXACT same Horrific radicculpathy,etc the same weeK!!! including a whole family!!!
.After about seven weeks and alot of prayer it was nearly gone , when WHAMMO !! the pain came back ,only this time ALL OVER MY BODY!!!.. Even my nipples hurt! Completely unpredictable MIGRATING PAINS OF 57 VARIETIES ANYWHERE AND EVERYWHERE.Truly BIZZArre it has since died down alot but never completely gone. I was testeed a THIRD time for Lyme ..still negative.
i work full time and laugh and enjoy life..My best days are nearly pain free.Thank God, my worst days can be quite unpleasant..
The latest chapter ...I am losing motor function in the lower half of my body. Stumbling constantly and nearly falling often. I can't run ,go up stairs or down and cant get up from a seated position without help .My knees buckle all the time and my muscles spazz alot.I am very stiff any time I do stand up for a couple of minutes .I started to twitch in arms and face. My reflexes are abnormal.as well. I see a neurologist on Wedesday.needlessto say I am nervous about it. Does
HAs anyone else out there experience these truly BIZZARRE and maddening symptoms?
Is it possible that The radiculopathy episode actually was a new infection.? A strain that is transmissable person to person? What's th likelyhood that 9 people would come down with this uncommon thing the same week?
If it was , Was it Lymre or something else? West Nile?
if a person is reinfected a second or third time, does the body react more strongly to the bacteria and so you get a nastier version of LYME? as happens with Dengue Fever? ny ideas?
What's going on with me now? is it Lyme rearing yet another ugly head or is it something else?
And of course , WHAT CAN I DO ABOUT IT?
I am allergic to most NSAIDS ,and some antibiotics.as well as Flagyl.and most narcotics dont work for me. so I live without drugs and take herbs for pain which has made it manageable so far.
Please if anyone can give me any ideas of what is going on .
What and how much do I tell my neurologist on Wednesday.?
If I say I think it's Lyme He just might shut down on me and dismiss me as somone with a monomania.and not take this latest development seriously. If I dont tell him ,he will lekely misdiagnose me with some other nasty thing a i will not get treated properly.and end up drooling in a

Thanks and better health to all
PJP.
Hi,
and welcome to the boards here.
I have no diagnosis currently and just to fill you in
STILL waiting for my westren blot test results and IgenX
test kit. To determine or try to what in the HECK is wrong with me.

HAs anyone else out there experience these truly BIZZARRE and maddening symptoms?

::raising hand and your symptoms sound A WHOLE lot like mine.
Most of my symptoms point to neurological according to my PCM.

My legs feel like 2 ton bricks. Getting up from sitting? I have to rock
in my seat enough to get the forward motion enough so I can then
use my arms/hands to lift myself.

::The tremors I have in my hands/arms burn my muscles and it
literally feels like I have run marathons.

::Fatigue: I sleep from 3am-12pm then get the overwhelming urge
to go lay back down only after being awake 2-3 hours after that.

::The night chills have picked up lately too. I have actually taken my
temp and it would be 97.8 or 98.0. And the left side of my body would go numb.

(those are my major symptoms).

I feel Dr.'s are just writing me off.
Just cannot help me.

Just wanted you to know you are not alone.
Jennifer

 
Old 08-28-2007, 11:18 AM   #3
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 679
Smyle HB User
Re: Please HELP...Weirder than weird!and weirder yet...

Paulette and jenillumine-

These symptoms are very familiar to me...

I don't have most of them anymore, but I have been treating Lyme now for almost two years (two years in November)

Paulette - I tested negative at Quest. Indeterminate at first at Igenex, but I was producing positive results to a couple of Lyme specific bands. If you are positive at even one of these bands...23-25, 31, 34, 39, 93 - then you have been exposed to the bacteria that causes Lyme. After 7 months of treatment I now test positive for Lyme.

I too had an almost photographic (actually for me it was audiographic memory) At first it was really impaired. Now I am much better. Tremors, stumbling, seizures, parasthesias on and on. I still get some of these things from time to time but now rather than daily they are a couple of times a month, maybe. I will continue to treat until these symptoms are gone. I have not tested positive for any co-infections but I had all the symptoms of Babesia and have many of Bartonella. I am treating Babesia now and it is helping. I will treat Bartonella when I am done with the Babesia.

I saw one of the nations top LLMDS. He told me it takes on average 1 - 3 years to get rid of Lyme (yipee, I am still in the norm !) The shortest amount of time that he as seen it take someone to get well is 3 months... the longest is 7 years.

Good luck - let us know if you need more help.

 
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