verbal communication: -the thought/idea is there i just can't find the words to say it - or can't seem to know how to say it -or i say it but words are missing in my sentences though i don't know it because in my head i thought i had said it.
memory: - more than just long term short term mem. lost .. more like in the middle of speaking - i'll hit a hard wall and not know where i was going with my thought pattern at all.
there's more examples but this should be enough to ask my questions:
1) does this happen to anyone on a severe level - to where you find it hard to do your job?
2) how long are your "episodes" - mine are anywhere from 1 day - 1 week
3) do you have any suggestions on how i can prove this is a real prob. to the insurances so they won't think i'm lying. i'm having trouble with them okaying my disability - they claim if i can live alone then i should be able to do my job too.
4) any recommended treatments to help this?
i feel bullied and helpless.
Posted by Lymetoo (Member # 743) on :
Join the club!! I used to be very cognitively challenged. I taught elem. school and believe me, even my fourth graders knew something was wrong!!!
I don't have answers for your questions, but I'm sure others will.
There ARE tests to measure cognitive function. I'm not sure which kind of dr would administer these tests.
Are you on anti-depressants? Sometimes they can help with the brain fog.
You could also get hold of some mangosteen juice to improve the brain function. It's worked great for me. My husband no longer thinks I have Alzheimer's....
Go to this link and click on "Brain"...then "brain fog":
[ 11. January 2007, 04:51 PM: Message edited by: Lymetoo ]
Posted by dontlikeliver (Member # 4749) on :
I don't know the answers ('cause I'm too dumb too)....just to let you know you're not alone.
Generally, I'm fine, but it is a problem when it comes to reading comprehension. Terrible and have to read and re-read and re-read and re-read, etc.
Posted by Vermont_Lymie (Member # 9780) on :
Hi Maia,
me too. I have been very challenged in this regard, and I could have written your email.
I am now finding after 6 months of abx treatment, that I am finally getting much better in this regard. I hope you have a good llmd and are getting the best care possible, because these symptoms of lyme are treatable. But has taken me 6 months to get where I am today -- better, but still needing treatment.
Nutritional strategies help too, vitamins (the B vitamins, lecithin, Mg, etc.) and the Buhner protocol herbs: Andrographis, resveratrol, and cats claw. Get his book and read it.
As to proving your cognitive difficulties -- isn't this where a report from an llmd or lyme literate neuropsychologist could help? Do a search here for cave's recent post about cognitive deficits in lyme disease...and searches on herbal and nutritional supplement suggestions.
good luck and although it is difficult, be patient, get good medical care, and read as much as you can about lyme disease treatments. lots of useful info posted here on lymenet. best wishes.
Posted by Moosie (Member # 10033) on :
This really caught my eye.
Just this morning, I was telling my husband that once, I did have a brain, now I don't, or at the very best, it's a wheel of Swiss cheese now.
I had an awful time at work the last year and half I was there. I worked for a very fine domestic attorney (yes, they do exist and actually do care about there clients, especially the children), and a large part of my work was drafting documents from notes he took from court, then he would tweak them. I had a lot of responsibility, and was given loads of freedom to compose and write these court orders up for him, often, with very few changes. At times, he would just add in commas just to give me a hard time.
That all changed after I had a really serious relapse in April of 2001. I did regain some of my ability, but it never came back. I also started having extreme difficulty with proof reading.
This caused me huge problems at work. My boss was real cool about it all because he knew I was struggling physically, plus we were in the middle of trying to get me out of my very bad abusive marriage of many years. He would tell me, "you are going to get through this, get over this, I expect you to get well." Meaning emotionally as well as physically. I did, but only to a point. There is no way on earth I could go back to the work I used to do and not end up being canned.
I always believed that my problems over the years were caused by some bug that hits me up now and then. I went from being a very capable, intelligent, energetic person who worked in the legal/political arena for YEARS, to being early retired and I'm lucky if I can knit a scarf and prepare a meal most days. It really sucks, big time.
My biggest problems right now are short term memory problems and some verbal difficulties.
Examples: I was a guardian angel in our church's Christmas program this year. Practiced and practiced. Comes to the big event and I'm reversing the first part of words. I said "Bazareth and Nethlehem."
That was the worst of it. However, the remainder of my lines I sounded like Elmer Fudd. I could not say my "r" sounds for anything. Twip, instead of trip.
I'm still being teased about it. My pastor, bless his heart, has asked me to read scripture and lead prayer this coming Sunday. . .
Yesterday I went to the doctor for my weekly alergy injection. When asked what I was there for while checking in, I said, "for my vee benom" injection.
My hairs are leggy.
My friend Keith is having solder shurgery tomorrow.
My peeks are chink.
My dog has flicks and teas.
I got a million of 'em.
Take care and you are not alone, Moosie
Posted by Marnie (Member # 773) on :
Not so technically speaking...your brain is in hyperdrive and trying hard to put the brakes on.
There are many causes for "brain fog"...all apply.
You could try Ginkgo..it isn't for everyone, but might help.
It is in Pharmanex vitamin/mineral daily packs...which Dr. B recommended as one of the supps. years ago. Recommended 2 packs a day.
Absolutely a need to keep the nutrients up.
It TAKES nutrients to make all the neurotransmitters and a lyme infection (plus co-infections) depletes a number of nutrients.
They are all "parasites"...they feed off of US. But we need the nutrients to FIGHT them. It gets really specific...as to which ones will help us the most.
Keep pushing...mental "exercises"... BECAUSE we actually make more neuro receptors when we LEARN. Truth. It is the # of working receptors that is so critical.
This is how some people recover after strokes...more neuropathways and receptors are made. Even kids with LD/ADHD - if provided mental stimulation and the right nutrients - can overcome many (but not all) of those disabilities to a degree.
A long time ago, we thought brain cells did not regenerate. Now we know they can...over time.
All is not lost.
Posted by AZURE WISH (Member # 804) on :
maianh007 I understand.
I used to be smart too... now I am considering putting out an APB for my brain.
Moosie - I asked my mom if she docked the loor.
Posted by Carol in PA (Member # 5338) on :
It was either this article or one very similar to it that convinced me to find out if my diagnosis should be Lyme Disease instead of Fibromyalgia Syndrome.
Carol
Posted by Larkspur (Member # 5131) on :
I was reading these posts with interest too....
the other day I ate a piece of cheese (like from a wedge) and my husband and I couldn't find what I did with it anywhere!
I figured it would turn up (by smell alone) if I had left it somewhere.
Well, a couple days later I found it in the freezer in an empty box I had meant to throw away!
That being said, prelyme I worked with stroke and brain injured patients improving language and cognitive skills.
I plan to go back someday too!
Anyway, I have a wealth of knowledge/strategies re:coping with language and cognitive deficits
and was thinking about starting a website as a resource for lyme patients just to give
some ideas (like Marnie touched on - activities to stimulate those cognitive neural pathways,
compensatory strategies, definitions, basic information about word retrieval etc.)
I don't think there's a resource like that right now.
It is something I would enjoy doing if people were interested. Please let me know your thoughts...
Thanks guys! Abby
[ 12. January 2007, 08:28 AM: Message edited by: Larkspur ]
Posted by Hope4Better (Member # 10075) on :
pogo.com has all kinds of games and such that you can do in your spare time to improve cognitive functioning.
ive been on it since the relapse/reinfection since august..its fun and has work wonders for me
xoxo Lonna
Posted by karatelady (Member # 7854) on :
Mangosteen has helped me as it has TuTu but I just pulled a good one not 5 minutes ago.
I was cleaning out my Yahoo mail box and noticed a book I had ordered through a vendor at Amazon. I checked my bookshelf, it wasn't there. I wrote him and told him I hadn't received it.
He immediately wrote me right back and said I could get another copy of the book or a refund. I looked in my bookshelf again and there it was, a little tiny book, but the book, nonetheless.
I have a flying squirrel. The other day I told my daughter I was going to feed my frog. So that is one she hasn't let me live down yet.
Sandy
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by karatelady: I have a flying squirrel. The other day I told my daughter I was going to feed my frog. So that is one she hasn't let me live down yet.
Chuckle Dog says go drink some more mangosteen juice! Posted by LisaS (Member # 10581) on :
This is definately one of my worse sx of Lyme for sure. Im actually considering what to do
about my job, because I feel like Im making it harder for everyone around me. I mess everything
I try to do up. Sometimes I think I did everything right then I hear my bosses whispering
in the next room because they dont want to hurt my feelings. Im so tired of this disease.
But none of us are 'dumb'. Just trying to recover from a terrible disease that seems to
linger on and on with every possible symptom of every other disease. Then to make it worse
people try to give me suggestions, like, write things down... Well duh, why didnt I think of
that! Now where are those notes? LOL. But on the positive side, Ive read alot of posts that
say this 'brain fog' does eventually clear up with antibiotics and supplements.
Posted by Boomerang (Member # 7979) on :
That has been hubby's main problem also......terrible brain fog. Couldn't even get out his thoughts most of the time. Very frustrating!
Posted by maianh007 (Member # 10969) on :
thanks for all the help everyone. i'm not familiar with mango?? juice though what is that? and where can i get it?
does it taste bad? i'm also having a lot of nausia probs. - especially with light and sound and am always throwing up when i have to go outside (ie. to the docs). so i don't want to have more nausia probs. i've lost so much weight from this already (i'm under 80lbs. yuk!)
as for the cog probs. though - seriously, does this mean my "rocket scientist" days are over? i'm not joking this really was my job before i went out for the last 4 years.
as a "rocket scientist" i don't necessarily need to know how to write or spell but i do need to be able to think mathematically and scientifically.
all that studying for nothing? - man! if i knew i would have partied harder in school.
i've only gotten to use my degree for 7 years. then at 27 - i "retired" (i heard someone refer to me as that for the first time today - broke my heart) - i'm now 31 and i have all the intensions of going back to work - but i worry about the realities -
does anyone do technical work and find it hard?
does everyone still work? i hope i'm not the only lazzy *** around here. i always tell myself how much of a looser i feel with all this stuff happening - it's a good thing i have some achelaids and a degree to prove i once had a brain in case i can go back one day.
for the reading and writing - i've been doing bible study - followed up with meditation writing to help battle all the categories of lang. stuff.
I've been doing it for 3 years and it's been a good mental and spiritual help. I also send my writing to people who are chronically ill - as i figured the WORD could help us all. .. just another idea to try if you'd like. believe me it's a challenge.
i'm alone in this country - and grew up without my family here - so all these years have been a little hard. That's why i cling on to my faith - it's all i have.
i always joke with friends though and say - if i could make it through a VC (VietCong) prison camp at the age of 4 and a horrible Thai refugee camp at 5 then i should be able to handle anything - right?
my life's been a challenge - every 31 years of it.
sorry for the momentary sigh ---
Posted by maianh007 (Member # 10969) on :
oh - also
how about episodes of not being able to speak coheirently at all? like months in a row .. the first couple months were just crazy sounds ...then the last 3 months i had correct intonations but the words didn't make sense.
like - slippery peanut butter wet?" - and if you answered me i'd continue talking for hours like that.
i also have done a lot of things (most dangerously at night - since i can't sleep at all from pain - going on 1.5 years of being awake or on off 5-10 mins. sleep) like drive, buy crazy things from the internet and infa-mercials sp? , or cutting flowers in the garden outside with big hedge clippers at 3AM .. without recalling any of it.
i only knew about the flowers the next morning because i was still holding daisies (still with some dirt and roots ) in one hand and a big hedge shears in the other hand .... plus i don't have any daisies in my garden - so i don't know where i got it from.
please tell me this stuff is all "normal"
it's calmed down some ... but still not quite as innocent as forgetting where i put something. i worry i might hurt someone - or myself one night.
Posted by smiles132002 (Member # 7949) on :
A classic example of how lyme makes you dumb-posting the same thing 3 times!!!!
Posted by Marnie (Member # 773) on :
While researching for old files, I forgot about this one (over 1800 MS word files...not enough room in my head!)
Ginkgo Biloba:
Additionally it is a known antioxidant and helps the brain to create ATP.
Piracetam
Piracetam has been used for over fifteen years as an aid in the treatment of alcoholism, dementia and stroke.
Developed by UCB laboratories in Belgium, it has been found to increase the flow of information across the corpus callosum, the set of fibers that connects the right and left hemispheres.
It has been shown in clinical studies to improve the integration of information processing, attention span and concentration. Piracetam has also been used to treat conditions of hypoxia, or too little oxygen.
It has been particularly effective in the treatment of dyslexia, stroke, senile dementia, and in rehabilitating a brain that has been damaged chemically.
It acts to step up the production of ATP and improved cerebral microcirculation (blood flow). It also appears to enhance protein synthesis. The fact that is has been shown to increase the flow of information between hemispheres is particularly important, as this alone will improve cognition, memory and all learning skills.
It has been shown to have no known side effects or toxicity of it's own but should not be used with amphetamines or other psychotropic as it will increase their effects.
Despite its extensive clinical use in Europe, piracetam has not been approved by the Food and Drug Administration (FDA) in the United States. For more information, visit www.piracetam.com. Posted by bettyg (Member # 6147) on :
maian
hi there; go to all the pages i sent you earlier tonight to right after the long list of all lyme symptoms.
that's all my SSDI, disability insurance comments.
marian's cognitive post is shown there plus lots of other good stuff.
read thru them; it WILL HELP YOUR CASE! Posted by MariaA (Member # 9128) on :
I know that there are different theories about what causes Lyme-related cognitive dysfunction and there are very different ways to cure them depending on what the exact problem is.
However, there's a theory that some of the cognitive dysfunction is due to toxins given off by the bacteria, and there are several 'mop-up' supplements that you can take to improve clarity. One of the methods some of us use are prescription cholesterol drug - either Welchol pills or cholestyramine powder (referred to here by some people as CSM). It's prescrbed for something else , but some Lyme doctors and 'extreme mold sensitivity' doctors think it binds some of the Lyme toxins and helps your body excrete them. Natural alternatives, less effective, are chlorella, citrus pectin, bentonite clay, charcoal , and some seaweed products.
I had amazing results with getting rid of brainfog when I take the Welchol. It doesn't address the underlying Lyme itself but certainly helped me function. It's about $200 a month at Costco pharmacy prices, more elsewhere. I'm not sure how much cholestyramine costs.
Posted by Squeegee (Member # 7219) on :
MariaA -- I had a $5 co-pay for cholestyramine (I have Blue Sheild HMO).
maianh007 -- there are other ways Lyme makes you "dumb", too. For instance yesterday when I put on a jacket I hadn't worn in a long time and frantically searched for the zipper pull. I examined the zipper from top to bottom and it just wasn't there.
Along comes my husband (barely even trying to control his laughter) and points out that the zipper pull is indeed there -- on the LEFT side -- duh, because that's where they put them on womens' coats!
I just told him how glad I was that I could provide him with such entertainment (but really, it's very embarrassing and disconcerting.) I've read over and over that all this stuff gets better in time.
You used to be a rocket scientist -- I used to be able to dress myself...
Posted by Silverwolf (Member # 9196) on :
Hey there <<<<< Maia' >>>>>,
I have Sawdust problems, I meant Sinus ya know .
This morning,I was trying to say, Wrinkle Reduction amd it came out Redinkle...
I've been known to take my coffee to the freezer to warm it[well our other frig' did have a top freezer that opens like the microwave].
ANd I get 'corndiffused' sometimes while trying to log on and off,and remember how to get from Hubbies e-mail to mine.
Ah well,Iv'e been told it'll get better soemday! Hang in there!
Posted by Marnie (Member # 773) on :
The cheapest way to pull toxins out is Metamucil.
I'm not kidding. We need fiber.
Re: mind exercises...I remember reading that learning to juggle is good for mind development.
Learn sign language (to music - easier to remember). (Learning something new. New pathway.) Some educational teachers' supply stores carry songbooks of the common songs we all know so well and show us how to sign to them. It is actually fun.
And...whistling. Yes, whistling.
Hum if you have sinus congestion.
Listen to Mozart...we actually make more dopamine...truly. Harvard study.
Posted by bettyg (Member # 6147) on :
maian,
you are a SURVIVOR having made it thru vc camp and thailand, etc. my heart really goes out to you for the 31 years of hell you've gone thru fighing to stay alive and have a productive life.
from my newbie links ... lights, sound/chemical smells:
Betty's ROLL CALL of MEMBERS WITH EXTREME SENSITIVITIVITIES TO LIGHTS, SOUNDS/NOISE, AND CHEMICAL SENSITIVITIES
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.
Does the cholestyramine help you? I know so few people who've tried this but it feels to me like I get almost instant relief (within a few days) when I start taking the Welchol.
maria
Posted by Boomerang (Member # 7979) on :
Maria, my hubby was on it for awhile.....didn't notice a big difference. I'm wondering if he shouldn't take it again now, for some cleanup....
I dunno.
Posted by Lymetoo (Member # 743) on :
I took CSM for several months. It made me feel clearer in the head for about 10 days. It finally "got to" my stomach. Had to stop.
I then switched to Welchol....same thing. I wonder now if it was my GB reacting to it.
I'll stick to my mangosteen, thank you very much. Cheaper too! No side effects.
Posted by hatsnscarfs (Member # 6562) on :
The best thing for clearing up my brain fog is tetracycline.
Lately (after 2 1/2/ years of treatment) I'm having some really good days where my brain is darn close to the way it was pre-lyme.
In addition to tetracycline I do lots of detox (water, detox teas, epsom salt baths, podi-patches and now I'm starting Zeolite). hats
Posted by Squeegee (Member # 7219) on :
MariaA -- the cholestyramine did seem to help. I mixed it with a small amount of orange juice and it tasted pretty good. I also liked it because it made me feel very full and I ate less.
I learned to sip slowly it as gulping it all down at once gave me a pretty bad stomach ache.
Posted by MariaA (Member # 9128) on :
Did it help you with energy, brainfog, or something else?
Maria
Posted by groovy2 (Member # 6304) on :
Hi All
My brainfuction was so bad I could not remember my daughters name-I got lost comming home from work and the store---
I could bearly talk and any kind of math was out of the question--
Now My mind has cleared and I feel like I have 3/4 of my mind function back---
I feel I might get back to where I am Einstein again--He could not spell eather--Jay-
Posted by John292 (Member # 4628) on :
OH yeah I got that problem of being dumber. The LD infected some arteries, blood vessels in one part of my brain, swelled them up and sort of gave me a mini-stroke I did not know about.
The MRI showed some reduced blood flow into the area of brain that remembers names.
Since I started on the salt/C Real Salt it has gotten better. I have less aggrivation and I can type faster.
Posted by bettyg (Member # 6147) on :
maian, thanks so much for signing the lyme petitions; i saw your name on lynne's going to congress.
i was very touched by your heart-felt statements! if that doesn't cause your congress person to choke up, nothing will. WELL DONE! Posted by hardynaka (Member # 8099) on :
Maia, I got my PhD in Japan on Indonesian studies in 2002. I had to learn Japanese from zero, had to learn Indonesian, wrote my thesis in English (not my mother tongue), defended it in Japanese.
In 2005, when I fell sick with lyme and co-infections, I could hardly find my way home from the supermarket.
I struggled to cook anything because I couldn't figure out the order of things. I'm talking about a single dish, nothing complicated...
I couldn't count the change when I paid something, I trusted the sales person. I forgot to take money when I went shopping, I crashed the car once, I wondered how could driving be so difficult.
So, you're definitively not alone in your symptoms. The good news is that I got, I think, all my brain cognitive 'powers' back. It's a bit rusty from more than a year without use, I feel like there's a blank in my memory, but I'm back !!!
I lack a bit of confidence from these 'blank' months, but it's more a pshychological problem, a sort of trauma, I believe, that came with the horrors of lyme disease. I'm trying to treat that too. I hope you didn't get to the bottom, to fear for your life. Then you'll really give a damm for your cognitive powers, you'll just be struggling to keep alive. That was my case a year ago.
I practically did no antibiotics, I treated with herbs, there are wonderful plants out there, many modes of treatment, if you search, you'll certainly find something that will help you.
It takes though a bit of time and research, trial and error, and you need a good guide, or you just can't make it by yourself. It's a truly complicated disease, borrelia is just a small part of the puzzle. And unfortunately, medicine is not an exact science. Far from that.
If you need more info on herbs and alternative treatments, I post more on the yahoo Buhner's forum (that discuss the Healing Lyme book of Buhner).
Your brain is not lost, it's just in stand by mode! Treat the disease, you'll get everything back. It's though a slow process.
![[Big Grin]](biggrin.gif)
I used to be very cognitively challenged. I taught elem. school and believe me, even my fourth graders knew something was wrong!!!![[Roll Eyes]](rolleyes.gif)
![[bonk]](graemlins/bonk.gif)
![[lol]](graemlins/lol.gif)
![[Smile]](smile.gif)
but i do need to be able to think mathematically and scientifically. ![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)