nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Makes me so upset. I can't remember anything! It takes a few minutes for my computer to connect to the internet. During that time I completely forgot why I wanted to go online! No clue.
Infuriates me and this happens all the time. So the only thing I could think of to do was come here.
It is like a loss of consciousness; a black out.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Before I came down with Lyme and Co., or perhaps before I knew I had come down with it, I found the label ADHD described me to a T. In addition to the meds (adderall) I also started to use Microsoft Outlook to manage work appointments and such.
I have since switched to Google for work and personal schedules. So now I am reminded via email or text to go to a meeting, or take out the trash.
I have had some serious trouble keeping up with life, but I feel like for the most part I at least know what I am missing.
Google cannot remind you what you were thinking of a minute back. But it might help with some of the stress associated with feeling like you are losing your mind.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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I think with all the pain and suffering this disease brings, the hardest part (for me at least) is living without my brain!
Coming here is always a good choice! Posts: 60 | From MO | Registered: Jul 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't have pain any more - knock on wood. Just headaches now and then. I can think better - not so confused. BUT my memory is pitiful.
I can't get organized with the computer's help because I don't understand the computer, and any attempt by my husband to explain anything to me just makes me anxious or angry.
He would have to leave stickies posted all over the computer directing me to finding directions. Maybe not such a bad idea.
I also mistype words all the time. Write the wrong words, reverse letters, leave things out. . . There is a glitch in my brain. My brain function is what worries me the most.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Same here...my brain is horrid! ' Never had much joint pain or fatigue! It's all lyme brain for me...it sucks ..totally!
Good luck to all of us! Hopefully, we can get our minds back one day! I miss mine tremendously!
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I scored nearly perfect on my SAT in high school.
Now I don't think I would pass.
I used to be a top notch automotive technician specializing in diagnostics.
I won a scholarship based on test scores and a hands on diagnostic competition with hundreds of competitors.
Today, I can't remember squat.
Sometimes I can't follow simple conversation.
When I read, the words make sense... then, I can't remember what I read.
The other day I kept flicking the switch in the living room and wondering why the light was still on. The table lamp was on.
I can't remember where I put my notes that are supposed to remind me what to do.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Heather, that story makes me really sad. This illness really is terrible. So unfair.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
seek - I wasn't trying to make you sad. Sorry if I did!
It is what it is.
I will get better. We all will -- if -- we NEVER QUIT!
I am really very positive about my situation most of the time... I am looking for solutions. I know I will find them.
I finally found an LLMD for me. Which is great.
I think I have been infected 17+ years. I don't know with what yet... but I am going to find out!
It took my son getting sick to help me see that I am sick and not 'forgetful.' Everything happens for a reason and we are all wiser for the challenges we face.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Is acceptance quitting? Gone from a multi-million $ medical office financial administrator to disabled and stupid. Was attending private Catholic college and 3 credits short of degree.
Sorry, but that's the reality of it. I fought it with every fiber of my being.
Please don't let me get you down, though, I just had to vent to the only people that really understand.
Thank you, all, for being there. Your stories, etc., keep me going.
posted
i have an awful forgetfullness too.. im treating since 2 years now.. my memory was very strong ang good before the disease.. i could remember things exactly.. i could say when they happend, how long they lasted etc.
now.. im happy if i remember what i've done today. i mean.. i can remember it, but i have to make a "puzzle". i try to make a story.. when i concentrate myself.. i can review the day.. not every detail.. but the most.. and so i'am going backwards from now to yesterday or the day before etc.
it isnt working always.. but what should i do?
im on a new job now, im a mechanical engineer and will leave university soon.. for those of you who have no hope:
in 2009, i couldnt write 1 test, the whole year, 2 semesters, in 2010 i started to rock it, i wrote even my maths exams 1+2 which most healthy people dont pass. i wrote 12 exams last year and made a project until this year in january, it was a A+. I wrote some other exams too and passed them. i want to say.. my brain fog is still there.. thats the truth.. i have still some psych and cognitive symptoms, almost 24/7.. actually there are maybe 1-2 days in 1-2 weeks where i feel that my fog is almost gone.. i think that brainfog, including forgetfullness, cognitive impairment etc. need a long term treatment. i'm focusing more on things like yeast, parasites at the moment (and bart, still pos).. i will see how far it will go.
sry for my english, motivation isnt very high at 21:30 after 9 hours of work.
greetz
Posts: 371 | From velocity of light | Registered: Sep 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
daniel that is fantastic that you are doing so well and gives us all hope.
I so relate to everyone else. I got on the internet to check my post and then immediately forgot what I was doing. The ADD is unbelievable. I was reading and answering other posts when I saw my own and was jolted to the realization - OMG, that is me!
When I remember a person's name I feel highly "gifted" - like a regular genius. I thank God for the moment. I thank God all the time for reminding me to buy mayonaise, pay the bills, return someone's call.
Two things just came to mind that I need to do. Maybe if I get off here real quick I can retain the thought long enough to get them done. Better yet, I will tell my husband to remember for me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
When I first got sick it literally scared me the way my mind was. I would read a paragraph and it was like I was reading Greek or something. It made no sense at all.
I would be driving and forget where I was going; or get where I was going and forget why I was there.
Definetly couldn't carry on a conversation with somebody. I think the brain fog was part of what caused distance between me and other ppl.
Now that I am nearing remission, this stuff has greatly improved, but I still have a terrible memory and still can't think of words at times. I am beginning to wonder if this is just the way it is.
Not that I'm complaining. A little memory loss, I can live with.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
In H.S. my parents were called in for a conference and were told I was "brilliant". At one job I was told by my supervisor I had the highest score ever on the test they administer.
I was teaching in a small school (an ACE school, not a traditional school and w/o a teaching degree) when it hit. I thought I had an early onset of alzheimer's. I was so afraid!
I developed a teflon brain. I was an avid reader and then I couldn't read a paragraph. I couldn't hold a conversation, I still have some trouble there.
A friend with Lyme said, "My rememberer is broke, but my forgetter isn't". That was so true of me.
It was really bad. Now, 3 yrs. after doing abx I can say that things have really improved. Yes, I still have difficulties, but nothing like they were. I can read now, yay! I don't have the same drive in reading, but hopefully it will come.
I was so analytical about what words meant, did I really know, etc. I would have more commas in my sentences then I do now and started to realize how fractured my sentences were. I don't have as much trouble now with writing sentences.
I still can go online and forget what I wanted to do and walk into a room to do something and forget, but now I am remembering in a few short secs. Like someone else said, I thank God everytime.
That's another thing...is everytime a word? I cannot remember what words are compound words. I use to often be guilty of typing words that in some way were similar to what I actually meant. Now it just seems I do that we are vs our. Probably because I am lazy in my pronunciation of our.
I am thankful for Firefox's spell checker, too. LOL
liz
PS LOL! When I came back to read the replies I saw that I put "we are vs our". The "we" should have been "with". It's a perfect example of what I was typing about.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
It's nice to see the encouraging posts. I have had times when I wonder if I should just accept that my brain will not get better. I just don't think that is my path. I will continue to fight.
On the bright side, I feel so incredibly grateful when I am able to engage in a conversation as opposed to always feeling disengaged.
A couple things that give me hope:
1. Most all of my other symptoms are gone so I know that the medicine is working.
2. I have had times when I was able to think again. This leads me to believe that there is not permanent damage. I was thinking more clearly on Babs meds.
Posts: 2232 | From USA | Registered: Aug 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I feel more like myself when I'm off the abx (like I have been for a couple months), but at the same time, the brain fog is getting worse and worse again... I keep misplacing things in my house, have no clue where I saw them last, etc. and I seem to get lost in my own thoughts, kind of like a broken record just playing the same speck of the song over and over...can't figure out what I was doing or what I wanted to do next, and am just stuck...but this is inside my brain instead of in real physical reality. Heck, I don't know if that made any sense...LOL!!
My sticky note reminding me to do the things on my to-do list is calling again...LOL!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Mom lyme I am sorry I laughed when you posted! The light thing was as good as me yelling at everyone for losing the shampoo and I found it in the freezer!!! We must be so sight to everyone else?
I got my master degree in may 2010 at 50 years old for public administration. The last year I was struggling but thank God for group work, I managed to graduate with a 4.0. One month later, I lost my mind!!! Still have not found it, can't remember my own phone number or address half the time.
I actually make flash cards and review them each day to remember the basics now. I think I may have alzheimers, truly!! I can no longer work as an accountant for the NYPD. They will not take me back without a note saying "I am clear for full duty and 100% well"...will that every happen? Its been 9 months out now and 4 months in treatment...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
annier, congratulations on the 4.0 and degree! Since getting sick, I have had nightmares about going back to school. In the dream I forget to go to classes and then the year is over and I am thinking OMG, I missed everything!
I also worry that I have alzheimers (copied your spelling so I wouldn't have to look it up). I was watching "Grays Anatomy" and probably failed the test for the alzheimers patients - put me on the trial! There were three words to remember - one was spoon.
Last week I called an attorney and left a message on his machine. Next thing I know he has sent an email telling me he filed something with the court. What did I tell him!?
So I emailed him telling him I have lyme disease and poor short term memory so it is best for me to communicate through email so I can remember details. I asked him to please give me an estimate of costs. I have not heard back and am very worried that again, I may have said something wacky. He is a good attorney, not someone trying to take advantage.
I have blank outs. I do not know if I took my pills this morning. Within minutes after I thought I took them, I blanked and could not remember for sure. As the pill organizer is empty I still did not know - was today the last day?
Same thing with the meds for the horses - " It is in the feed bucket in the right hand, right hand, right hand"> BLANK > No idea which hand it is in. All the time - every single day.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
LOL @ 3 words, not at you, at me. It was an epileptologist who gave me 3 words to remember. Actually, the 1st word was 3 words in itself. How fair is that?
So, later in the appt. me he asked me for the 3 words. I said, "What 3 words?". It cracks me up now. Then I remembered the 1st one that was actually 3.
He had to give me a hint for the 2nd. For the 3rd he gave me a hint and when that didn't work he gave me forms of 4 words and I guessed one. Well, it was the right one, but I thought it was the form he gave me - wrong.
Posts: 471 | From NJ | Registered: May 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have also been decorating Ukrainian Easter eggs with friends. Theirs are beautiful - so perfect! Mine have squiggly lines, can't follow the directions and get the colors wrong- UGG I guess I am having fun, right?
Last night I showed my son how to make one. It was his very first one and it was gorgeous - perfect. I ate mine.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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This illness really is terrible. So unfair.
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