posted
If you've had lyme over 10 years, undiagnosed, and later went under a LLMDs treatment, have you found yourself to at least be more cognitive?
I've been sick for nearly my whole life (about 7 or 8 years old). I can't even begin to think what it feels like to be able to think clearly, not be in pain, etc etc.
I guess I'm just looking for hope because I'm so afraid that I'll be stuck like this forever....
Thanks guys
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
| IP: Logged |
posted
Me and my LLMD think it is likely that I am congenital. So, definitely more than 10 years.
I was working on my MBA when the symptoms hit. Horrible confusion, inability to read/focus, and cognition went to nearly zero.
Before I saw my LLMD, I did some alternative therapies to try and slow down the rate of deterioration. I did salt/C and that really helped with focus and cognition. B vitamins helped as well. These things can be used as an adjunct to abx therapy.
It does get better, just hang in there.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi!
I will probably be able to answer you in the next several months....hopefully.
I have had lyme for 21 years and just got a diagnosis in Feb... just had my 2nd LLMD appt.
NEVER lose hope....in fact this should be your most hopeful time since you know what is wrong now and are getting treatment, right?
Even if you haven't seen improvement yet,my LLMD says everyone is different and it depends on so many things.
Never give up...you have a lot better chance of getting better with treatment, than if you do nothing...right???!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
I have had Lyme for 35 years and all my cognitive abilities have returned.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I had it 17yrs before DXd...All my cognitive abilities are fine unless I do too much exercise.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I've had Lyme for at least 13 years (had worsened symptoms that landed me in hospital for the first time then), but more likely for about 30 or more, so I definitely have had strong cognitive problems for a long time.
When I was in highschool in the 80s I used to tell my closest friend I thought I was losing my mind because it felt like all of my thoughts went behind a veil, and like there was an empty place in the front of my head. I didn't feel like "me" anymore, and felt like the way my brain worked had fundamentally shifted.
By the time I was in my 20s, I started even losing the ability to do simple arithmatic and even to alphabetize! When I was young I was in advanced placement and was a straight A student - there seemed to be a distinct point of loss of cognitive ability, and then a gradual decline.
When I became debilitated several years ago, I became completely cut off from the world - couldn't talk on the phone, carry on a conversation in person, or write an email.
After less than a year in monotherapy antibiotic, I am finally posting up a storm here, and in much better commmunication with family, if not yet able to be in contact with extended family or with friends.
Also, my handwriting just recovered greatly this last week! It was a sudden change, which was odd. Now I rarely transpose letters or mangle them, and I don't have to always concentrate on writing each letter with all of my focus. Of course, now my typing is a little off, but I can't complain, I can just edit a bajillion times. hehe
I shoudl say it's not ALL better yet, by any means, but I am improving perceptably. I still have word recall problems, and I forget things so much it's pretty scary, and I call things by the wrong word quite a bit (a vacuum cleaner = a suitcase, for example).
Other cognitive things as well are still bad, executive decision-making, abstract thinking, imagination, etc., but that's not important, what is important is I am getting better, slowly but surely.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, definitely! My thinking is much clearer and I am capable again of better reading and writing. Short-term memory takes a bit longer....hang in there.
For me the physical symptoms went away with treatment before the major cognitive issues. You need a good llmd and patience, and probably like me, alot of multiple abx and healthy living for sometime in order to see good progress.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
I've asked myself the same questions. I had had lyme sence I was 6yo. It's been 30 years of poor cognitive function. I have never known what its like to think normally either.
Everyone thought I was just "slow". Because I never could easily learn it made everything so difficult for me.
I didn't get the pain and everything else until I got pregnant in my late twenties.
I got good at pretending I understood. It caused so much anxiety for me.
After a year of treatment the cognitive functioning is the slowest coming back but I think I'm seeing an improvement. My LLMD says this is typical.
I am realizing that I'm not going to magically know my basic math facts. I'm going to have to relearn it as my brain can handle it and it will be a long process.
I don't like this but that's just the way I think it's going to be with me. I just have to be willing.
Now I can't remember what else I was going to say....
Don't lose hope, there is always hope.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
| IP: Logged |
posted
I think what REALLY scares me the most is that I have been accepted to medical school.
I have deferred my acceptance to next January.
I'm so terrified that my brain and body won't be able to keep up when i go. (somehow i was able to do at least minimum to get in somewhere)
I'm scared that i wont be able to live out what i see to be my calling.
...I think I just want to cry because though on treatment via iv and orals, my brain still feels like mush. and that scares the hell out of me.
Especially since I'm in line to become a physician.
thanks again for all of your replies.
~Green~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm in the same position. 22 years, however my treatment has not been as extensive and fulfilling as I would like. Treatment however is just now getting incredibly aggressive and comprehensive. We'll see what happens next.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I've been ill for about 13 years. I'm still struggling with it. I'm not sure if I have Lyme or mycoplasma infection, though. It might be both...
It's tricky for me. I try to do things to help my brain function better. I was doing biofeedback therapy for a while & I like to use CDs like Hemi-sync which can improve brain function. http://www.hemisyncforyou.com/
I just want to say it's wonderful you got accepted to med school! I hope you will try to do the best you can with your opportunity.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymeloco
Unregistered
posted
WELL OVER 10 YEARS FOR ME. WHAT DO YOU WANT TO KNOW?
COGNITIVELY SPEAKING? NO!!!! I HAVE ENCEPHALOPATHY AND TRY TO KEEP MY MIND SHARP BY DOING MIND GAMES!
THERE WAS A TIME THAT I DIDN'T EVEN KNOW HOW MANY GRANDCHILDREN I HAD. HOW SAD IS THAT?
I WILL FIGHT THIS DISEASE NO MATTER WHAT IT TAKES, AND I WILL LET YOU KNOW HOW WELL THAT I'VE SUCCEEDED! HANG IN YOU YOUNG IN'S!
IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Don't know when I contracted Lyme, but probably at least 30 years ago, diagnosed 2 years ago, 1 year on abx.
It is hard to define the cognitive effects because my brain sticks like porridge with some thoughts or tasks, but functions relatively OK with others [eg. I have been able to do fairly well learning Italian over the last 10 years, despite memory problems [and also good at Sudoku!].
There is a lot of anxiety related to tasks undone or worries for the future re. my cog. ability and a sense of my brain flinching or putting up walls over certain things.
Funnily enough, it is only now I'm having an enforced break from the abx because of allergy that I am noticing that my brain fog is worse, so I think abx helped to some degree in this respect.
I have read of people who have made big improvements despite having been ill a long time, so take heart!
posted
It's probable I got lyme as a kid so that means, 30+ years, and possible I am congenital.
I got diagnosed in 2005 and all my life the biggest stuff was the cognitive and gastrointestinal but it was always something I just dealt with.
Twenty years after the tick bite I recollected, then came the shooting pains and migraines and vertigo and some anxiety, memory stuff and organization trouble.
Went another 12 years before being diagnosed which was a long slow insidious progression. I hiked all the time in the woods and was bitten all the time by stuff so I could have gotten some new encephalitic thing, don't know.
I was basically almost in a coma for over a year before diagnosis and I really can't explain how terrible it got.
Three and a half years later with antibiotic, acupuncture and other treatment, I am doing better than I was at diagnosis but I am still disabled and haven't worked in about two years. I haven't done antibiotics in over a year....I am very sensitive and can't tolerate much in the way of meds/abx.
What therapies have you been using to improve? I am still struggling with pain, confusion, ....
Mary
quote:Originally posted by Vermont_Lymie: Yes, definitely! My thinking is much clearer and I am capable again of better reading and writing. Short-term memory takes a bit longer....hang in there.
For me the physical symptoms went away with treatment before the major cognitive issues. You need a good llmd and patience, and probably like me, alot of multiple abx and healthy living for sometime in order to see good progress.
Posts: 23 | From Vermont | Registered: Mar 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[lol]](graemlins/lol.gif)
![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic