any chronic lymers or lymers left with residue struggle with obvious confusion and inability to expr

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rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 7/2/2009 12:00 AM (GMT -6)   
I contracted lyme in at least 96 if not 90 and then remission but anyway I do the best I can.   I am easily confused it just happens out of the blue like someone says something to me and whoosh right over the head or i can not express intelligent thought comes out real crazy, this is intermittent but embarrasing as all get out as i have chosen to only share my health problems with this board (terribly eratic member) and my close family and only my closest (like 2 friends) because I want my privacy HOWEVEr they probably wonder why i do not work and am in the house so much but oh well.  what the problem is___-  I'd love opinions i have a 30th reunion coming up I don;t think i better go because i think there is a chance people will notice something is not right,  I can only fake it sometimes and then i quickly remove myself from the "confusing: situation.  Does anyone else have this problem?  My memory is real bad too and sometimes my mom will tell me things to well fill in the blanks. I really do not remember so much its bad enough a psychiatrist is going to try some type of alzheimerie drug on me.   I do not take antibiotics nor have I for maybe 2 or 3 years I just didn't feel like it was no longer helping.  here is an example i just asked my daughter if i could plkease have one of those yellow candy bars in cupboard turns out the name is butterfinger but i could not 'find" the name.    just wondered if anyone has this problem and is embarrased and avoids certain situations because they do not want people to know something is wrong.   thanks to the people who responded to mi cry  a few months back i don't remember what I wrote but i know I was down rather deep, but pulled back up.  thanks lisa

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/2/2009 12:31 AM (GMT -6)   
Lisa,

just last week i was talking on the phone to the satalite compy. in the middle os the convershion it was like she started talking to me in a foren launge. this scared me very badly.

i do not go out much at all now. i go to wal-mart once a week and Dr. appointments. other then that i am at home where i feel safe.

now if you really want to go to the reunion and you have someone you trust to help you. then i say go for it. do what you feel you can handle and if you dont think you can handle it then dont do it.

i am new to lyme has i just found out i have it 3 months ago. but i belive i have had it for about 10 yrs now. so do anything you think or feel is in your comfurrt zone. and to heck with anyone who doesnt understand i say :)
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 7/2/2009 1:14 AM (GMT -6)   
Yeah ... you're not alone in this.  I'm having a neuropsych exam in a few weeks to figure where/ how bad my deficits are.
 
But .... can I suggest a little different approach?  I'm sure sometimes people notice something is not quite right with me ... because something is NOT quite right with me.  My wife and I went to a small zoo today that's not too far away.  So I'm doing my usual walk for a while then sit in the shade for a while.  So ... I was sitting on this rock in the shade and one of the workers asked my to use a bench (they were in the sun).  I told him I just wanted the shade and would find a bench in the shade.  I walked off and I'm sure he noticed that everything was not "quite right".
 
So, anyways, it turns out that after i wandered off he asked my wife if I needed anything or if he could help in anyway.  Not everyone wants to judge us.  Some want to understand and help.
 
Just an observation, but trying to hide a condition like this is consuming a lot of your energy.  When you meet people people at the reunion, you can just tell them you're having a problem.  Laugh (it puts people at ease) and just tell them to please forgive any "senior moments" you may have and that's it's a problem left over from Lyme Disease.  Don't have to make a big deal of it - but you won't have to waste any more energy trying to hide it. 
 
RD's advice is very good.  Can you take someone with you?  I'd hate for you not to go to your 30'th.  And anyways, this is the over 45 crowd and a lot of people will have health issues of one kind or another.  Aches and pains and lotions and potions are always good conversation starters.
 
 
 
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 7/2/2009 8:46 AM (GMT -6)   
I am a long-time chronic sufferer, like my privacy & all of that as well - but with that being said, I agree with Rich. No reason "to hide".
Most people would like to understand. I am at a point (once again) where I can usually explain briefly & intelligently what is wrong with me.
I just spent a week at a huge gathering - a co-workers reunion for hubby (although over the yrs, I now have many friends there as well).
I actually had the opportunity to talk with several people who were very grateful for the info I was able to give them. One has a 12 yr old little girl that has been quite ill, but they had no idea how to get the info on Lyme.
Although it will take me time to recover from talking with so many people & being so active last week - it does give me a feeling of accomplishment & 'giving back'.
Maybe you too could help someone who has been searching for answers, but has run out of ideas of where to look next - maybe because they are as ill as you once were????

Something to think about - I hope....

Good luck~
Trav
- Traveler
Now living without appendx & gall bladder

"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro infection from LD, FM, CFS, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis").

Various meds for LD & co's,
1200 mg neurontin, 100mg trazodone
2000 mg chlorzoxazone 50mg Hydoxyz Pam
160 mg dicyclomine 2000mcg B12
40 mg celexa b-complex
800 IU Vit. E 2000 mg fish oil
6mg melatonin 400mg Mg Ox
AND... a multi-enzyme probiotic formula.

Gee, a person would think I was ill or something!! =)


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 7/2/2009 9:11 AM (GMT -6)   
Yeah I've been sick 9 years and I have these symptoms.... it can be so embarrassing. With MJ's passing I was trying to discuss "rap" music and "break dancing" with a friend and couldn't find those words.. I was saying remember when the kids would roll around on the ground..... and sing with rhyming words, etc. etc.

You're not alone on this one!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/2/2009 9:53 AM (GMT -6)   
I find it all to be very embarrassing and am much more comfortable around people when they know what my problem is. Personally, I would rather let people know there is a valid, logical reason for my strange behavior than let them wonder and come to their own conclusions. Who knows what they would come up with? LOL

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/2/2009 2:20 PM (GMT -6)   
RosesInJanuary,

I have been struggling with this for the past few years. It gets worse for me when I am on Antibiotics. Sometimes, I can talk pretty well. Other times, I am trying to "remember" a simple word I want to say. Its very frustrating to say the least.

A few times now, I have tried to say two words and they both came out as one word. I have no idea how that happens but it can be scary at times. I try joking about it and make light of the situation. It helps a little.

I agree that maybe you should go to the reunion and take someone with you. Im sure there are many people there that have problems. Just try your best and if you goof up, its okay. You have a disease. If someone has something to say, and Im sure they wont, then poop on them!
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/8/2009 1:35 PM (GMT -6)   
Lisa,
I have the same problem.  I finally told my husbands family a Christmas last year.  I couldn't hide it and I was herxing bad fever and all.  The other day our next door neighbor asked me how our trip was.  He took me by surprise and I didn't know what he was talking about (we just got a new camper and had taken our 1st trip in it the weekend before).  I'm sure he thinks I wacky, but oh well!  If you really want to go I say go and enjoy yourself.  Just an after thought you mentioned that your doctor was going to start you on an Alzeheimer's drug, have you ever been tested for a B-12 deficiency?  I've been reading up on it and it can mimmick early onset Alzeheimer's and also some LD symptoms. KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 7/9/2009 6:42 PM (GMT -6)   
yes
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 7/9/2009 6:54 PM (GMT -6)   
Gosh thank you for all of your suggestions, I really do appreciate them.
I will play it by ear if I'm feeling clear I will go if not well "something came up.!"
I don't feel like it but doc has suggested neuro psyc test I did one years ago and totaled it but who knows
that one was shorter than this one will be if i take it, this one will be long whew
Anybody ever have one?
thanks so much
lisa
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