posted
I have seen several times a freak out when neurolyme is suspected. Why is this so bad? Is it an indication of something "more"?
Does this question make any sense??? I cant seem to word it the way I want....
IMAGINE THAT!!??
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
cj, I would love to hear from people on this - all the great contributors with the wonderful medical knowledge - I can just about read again, but often can't understand what I read!
But I'd love to have this. My mind has been destroyed (hopefully temporarily) by Lyme, BUT - based on spinal taps, contrast MRIs, bloodwork, etc etc the opinion is I have never had a 'brain infection', and I believe them. So, does regular Lyme ruin your mind, as well as causing all those other horrible neuro symptoms, but it is not neuro lyme?
Of course I will remember the answer for only about 2 mins! . . . . but I'd love to get the group answer, and I do apologize for not being able to track long enough to grasp all of this on my own. I really am not lazy, just confused!
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I guess for me neuro-lyme is a disruption in the normal functions of the brain.
For me it is short term memory, speech and language, swallowing and sometimes balance and issues with dysautonomia.
Since I have dealt with neuro-cognitive rehab as a Speech Therapist I know that these
Problems specifically deal with my brain. Is it damaged?
Probably. Can I re-coup these skills again?
Probably. Can I have lasting "neuro" symptoms?
Well let's just say I hope and pray not as I would not be able to return to my profession
Of over 18 years.
I think neuro lyme is such a concern as it involves the most important organ in your body...
Your brain. (The only organ in your body with no feeling-Thank goodness).
This is my take on it. Trust me when I tell you I think anything that affects my brain
And it's ability to function normally is a big deal.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
This is why- neuro Lyme is what people can die of- that or cardiac Lyme- but sometimes neuro Lyme will not respond to treatment- like me going downhill for 28 months- straight shot to heck- until I turned- the mechanism of death seems to be anoxic encephalopathy for a lot of people- the brain gets starved of oxygen in key places and turns off autonomic function. But Lyme can kill and when it does it is very ugly.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I have had severe neuro Lyme symptoms, esp. after I was first diagnosed:
Some of these symptoms have completely disappeared in two + years of abx treatment. I only rarely stutter, only begin confusing words when stressed. My sensory distortion is improving, and I haven't been paralyzed.
Others like memory and thought processing skills are taking time to return to "normal."
Because I've been working fulltime in a new position, I can really feel these deficits on the job. It's helping me to do "brain" exercises. I've joined a site called: mybraintrainer.com
It does cost some money to join (I have no financial stake at all). But for me, it's been worth it to have access to daily exercises.
In addition, I play Boggle online (that's free).
Plus, I continue trying to stretch by reading poetry and academic texts.
It's really been hard for me not to think clearly!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Sarah (esp. but not uniquely),
Speaking of which, on this unpleasant subject, I have contemplated a number of times what would have happened to me had I not left this country to see the Dr. S.
I have hated to think of what happens _after_ where I was at:
* constant excruciating burning pain all over my body and behind my eyes
* a feeling of being beaten on my skin where my skin was exposed to light
* at risk of a seizure-like event with vomiting and diarrhea when I did so much as to leave my bed from a horizontal position in the dark
*Apart from the rest of the obvious and stated memory issues, cognitive deficits, trouble counting, speaking, focusing eyes, thoughts, etc. etc.
What happens next, speaking of neuro-lyme?
With best wishes for love and light, and happiness,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Neuro Lyme taught me first hand what all the special ed lingo on my student's charts meant.
I was a regular ed teacher who always had a room full of special ed kids because I was good with them.
Suddenly I was suffering from all those things, such as problems with:
auditory processing visual motor delays visual processing short term memory tracking word finding speech and language reading comprehension math computation following complex directions
The list goes on and on. Just today I was at my LLMD's and he had a form in such a small font I couldn't track it.
If I hadn't taught kids with those problems I wouldn't have known to take another piece of paper and place it under each line of print to follow it across the page and be able to answer the questions.
There were dots connecting the words to the answers, but they were so small I couldn't follow them.
It's why we ask people to break up their posts into smaller chunks so we can read them.
Long paragraphs cause my eyes to glaze over and I can't follow them at all.
I used to be a very intelligent person, and I even helped my daughter with a law school assignment last week!
But I can't do so many simple things it's quite frustrating.
Thinking can be as physically exhausting as exercising. I can't do either one without spending extra time in bed afterwards.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
ok here goes...I was trying to avoid posting my sympt earlier...but I seem to have have a lion's share of what seems to be "neuro-lyme"...
it's a lot different than my initial infection 4 years ago..tests show lyme plus babesiosis...which is responsible for which symptoms I don't know...I am leaving out the the connective tissue/disc stuff:
-nerve pain (stabbing and shooting) eyes, face, most of body
-tremors and shaking
-trouble concentrating and executing routine tasks
-word block, degeneration of spelling, typing, vocabulary
-trouble swallowing, lazy tongue sensation
-double vision, painful eyes, difficulty driving
-extreme fatigue , mood swings, depression,
I know I'm leaving some out but this seems like enough for now.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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posted
Late Stage Neuroborreliosis - the only benefit, I see, is that insurance doesn't question and pays/reimburses most allopathic medical expenses for this diagnosis.
It is recognized by CDC & IDSA. They can't tell you how to treat it effectively, but it is recognized.
The huge disadvantage - its fatal and you don't know you are slowly dieing. (I was dx'd MS & Fibro & critical)
Once you have a label - there is no need to find the cause and you just go down the road of the misdiagnosed disease.
Wasting away in complacency.
Many of the drugs used to `treat' autoimmune diseases, disable the immune system. No consideration is given to the possibility of cell wall deficient pathogens that have activated the immune system.
How about a course of abx and watch? But that would save billions of dollars in drugs and treatments......(and who funds the research?)
Any complaints & changes in symptoms are just chalked up to the earlier dx.
I imagine it is the same for a host of other idiopathic diseases/conditions that can also be misdiagnosed ALS, RA CFS, AD, etc. (Autism, ADHD, BPD?)
How many are fatal? How long does it take to die or become so disabled there is no relief?
The lists of symptoms are in all of these files and also check the disease process for MS, ALS, etc.
The pain and disability is unbelievable. Pain is a funny thing. You become tolerant of it until it changes, then learn to tolerate it again.
I suppose that is the same for any disability - we are all very gifted at adapting.
I believe that all Lyme has the potential to go `neuro', many of the symptoms are `neuro'.
It is a huge deal and everyone needs to be treated appropriately to avoid this path. In fact, all Lyme and coinfections are huge deals.
That's the enormous tragedy, with correct diagnosis, treatment and support `neuro' is preventable. Such a simple wish list.
It is nearly impossible to deal with when we can't read and comprehend, let alone seak help and keep ourselves and families going. (I wonder why we see so many past life 'type A's'?)
Please take care of your immune systems - Robin
Posts: 47 | From morgantown, wv | Registered: Feb 2007
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posted
well i have no doubt that i have neuro issues...no doubts at all. as someone else stated here it is amazing how we can adapt
for i have adapted over and over and over again throughout the years. my neuro issues will get extremely bad then go back through the curve back
wards then go back through forward again. cyclical....
what concerns me is the reactions i have seen from others - the reality that this is bad - worse than what i have ever thought.
i can recall several times over the years in a bad cycle just standing watching my children and thinking to myself -
i hope i am there to see them grow up - their weddings - the birth of their children - even next year swirling a sparkle in the air on the
4th of july - god please let me but not beliving for a moment deep inside that it will happen... and getting another erspone from a dr that
nothing is wrong - its all psychosomatic.
my face, shoulder, arm, chest - mri shows nothing - peripheral neuropothy dx...oh yeah and tmj...
my face locking up and spasing - nothing - incomplete bells palsy - no real issue - you'll be fine i was only 32
cant find words, names, cant comprehend what i just read, get lost driving down the road, my ears ringing, my vision blurred, cant walk straight as i am topsy turvy with vertigo
then it will pass again
i also have had gone into cardiac issues. 3 years ago my heart starting palpitations so bad that it would put me donw
my 30 day monitor showed major episodes of PJC's a few PAC's and a smaller few PJC's - so the cardiologist says, oh dont worry they are benign
i was only 35 yrs old
cant tell me its not serious
i just didnt realize HOW serious unitl finding i have LYME and seeing the reactions here of others when a symptom i have experienced
so many times over takes them to panic
a real wake up call
and quite depressing to say the least
like another post - i wont go into my connective tissue joint issues or the rest of my long list
what truly amazes me about our bodies is how strong we are though...adapting yes...but our bodies continue to fight even when we didnt
know what it was fighting but i know i felt it inside of me. as depressing as it is i still have some hope. if i have fought this hard for
so many eyars before i knew what i was fighting i now have knowledge on my side and i can fuse with my body in that knowledge and now fight
mentally as well
that is, as long as i stay on the positive side of neuro lyme.....
so my wish for us all is to remember what we do have - the only thing that really matters is time...
so
Love like your heart wont be broken (LOL I forgot the 2nd line!!!!! my favorite quote, OMG!!!!) ummmmmmm Live today like there is no tomorrow (???) and Dance like no one is watching!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
oh! and i forgot to mention!!! LOL only funny bc it was the biggest neuro issue i have dealt with
i ended up having a spinal fusion in 06 bc my pain level was so debilitating and neuro symptoms off the chart i could barely walk
i had/have a congenital condition that was apparently a weak spot open for attack as i understand NOW
had i known then what i know now i wouldnt not have let them do the surgery
i came out and could not use my right leg AT ALL
it took months to get back up and now i have perm (i hope that is incorrect) damage in my right leg, peroneal nerve
it just locks up and stops working..pretty scary driving, let me tell you, never know when it is going to go off!
ok...im done....
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
When I had first had Neuro Lyme/menningitis here were my symptoms
- I couldn't see, everything was blurry - Light killed my eyes - Sounds killed my head - Severe headaches - problems speaking - twitching/tremmors/spasms - memory problems - eye pain - I was doing strange things, like putting things in the fridge that didn't belong
I am sure I am leaving off a ton of stuff.
The only stuff that still lingers are the tremors/twitching/spasms but they are only 25% of what they were, memory problems, occasional headache, and sometimes I have trouble recalling words and I still get lost at the store.
That was my experience. I agree that we all have neuro Lyme to some extent.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
CanBrave what you are looking at is Alzheimers, Parkinsons, ALS... or mixtures of that IMO- that's what came next for me anyway- what people don't realize is that certain types of vasculitis CAN kill- I didn't know that before doing the memorial page frankly- but that seems to be a mechanism of death, in one way you might say peaceful- simply falling asleep forever- BUT it is ALWAYS accompanied by gross disability so it's not like you're fine and nod off, you are being tortured for months or years before it happens- not a fun way to go-
We don't all have NeuroLyme- some people have a static, chronic condition which does not significantly WORSEN over time, which does not PROGRESS neurologically. In pubmed you will find a whole different set of articles under neuroborreliosis than is under borreliosis.
Lyme fog is not enecephalopathy is not dementia. They are different!!!
MOST people with Lyme have chronic, static conditions in my experience. I don't worry about them the way I worry about the ones like me who were/are dying. I worry like heck about those people because it can be very rapid and time matetrs and treatment choices can ultimately mean life or death. MOST Lymies will not be like this, most will be impaired in their quality of life but not dying. We have people in group who were sick for 15 years pre-treatment- I went from bite to almost dead in 2 years.
I was mainstream physician diagnosed as having a mutli-systemic progressive neurological disease except they said it was "triggered by Post Lyme Syndrome" because they couldn't call it Lyme!!!
I had
-progressive muscular weakness leading on the left side until I could not rise wihtout help or without using my arms to pull myself up, my legs were to weak to rise on own, had to be helped in and out of bathtub
- slurring and slowing of speech
- word finding diffciulties, memory problems which became encephaloapthy which became incipient dementia where I no longer could remember my own childs name, could no longer drive, could no longer cook, could not remember one named thing for 2 minutes
- chorea (movement disorder) with athetosis in my left hand
- chorea major body jolts which would lift me in the air
- loss of balance to where I would fall
- tremors- boy I shook!!!
- fascitulations and twitches
- slowing this was so weird like walking through thick green pea soup!!! would turn on & off same as the slurring- when I got slow it would take me SO LONG to cross room, 15 minutes-20 minutes to walk ten feet, no joke
- micrography (micrography is when suddenly your hadnwriting becomes very small and cramped and different and WEIRD, you will know it if it happens)It is NOT just because of the arthritis I had or the CLAW hand I had, it was somethign different you will know if you have it
I was a Parkie-ALS neuro mutt.
And now I am normal!*)*!!)*!)*!*!!!!!!!!!! Thanks to that same Doc S CanBrave*)!*)! Bless him, bless him, BLESS him!*)!*)! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Now that u mention, havent seen a post from him in a while! Anyone know if he is ok???!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Lou is just fine!*)!*)! Still around anyway*)!!! Lou is in another group I am in and has been posting there regularly so that's how I know!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I have nuero lyme as I word find many times a day. I'll be talking to my husband and keep saying "uh, uh, uh, uh, uh..... that thing... that.... um, um, um" etc. Word finding is terrible.
I also mix up words and letters in sentences.
This is weird for me as I have an English BA degree. English and words is my passion. But it's gotten to the point now where I'm starting to scare myself. I really don't want it to get any worse than it is now.
I also had major balance issues where I'd stumble to one side, etc. It doesn't seem to be as bad as it was. I think it's because I've been treating Lyme for three and a half months now. My husband calls me his drunk when I stumble any more. I laugh because I know he's just joking and trying to make me smile.
I had an MRI done on my brain because a :duck: I went to see had thought it odd I had more trouble balancing on my right leg when I am also right handed. That and the headaches I have located on the right side of my head. The MRI came back normal.
-------------------- 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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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i echo everyone else. if you had it, you'd know why it's so terrifying.
posted
I am trying to keep myslef on a positive track but here goes some more negative.
As someone above said, among the myriad sympt is spelling...for me it's strange I do a lot off office emailing and document creation, I almost get all the correst spelling of a given word, but frequently in random order...ie rnamod odrer.
My main concern is my job itself...I do just well enough on a good day that many people don't even know I'm struggling, but my job is very technical AND very communication-intensive so it's hard to hide many days. I'm forgotten several decisions or statement made minutes before, multi-task several intricate operations simultaneously is a challenge to say the least.
I'm really hoping staying engaged and keeping a positive attitude will see me thru this, but there are times when I just stare blankly at my monitor or notes or someone's face in a meeting and tell myself "focus...focus" but I don't know on what.
I am anxious as I have to travel to very a technical workshop this week. Not only the trip itself, lots of driving, getting up early, being on time, but the learning itself...everything builds on what you know and is progressive...I fear I may fail but my job requires that I do this.
I fear that my 'professional' reputation may take a royal beating.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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