I was doing better the last few months and then I had to take amoxicillin for a bladder infection 2 weeks ago and it seems that my stress level and anxiety is much higher without added stressors. I am not sleeping well and having crying spells etc. My moods are all over the place. I cannot have a clear thought or complete a sentence at all. I have aphasia so bad-cannot get my words out to describe simple objects-that I am starting to stop trying to communicate. My mind is racing constantly. I feel like I am swimming in jello and cannot get anything accomplished no matter how many lists I make. I make phone calls and leaving a message is a battle without screwing up what I am trying to say.
If any of you have seen the article of what psychiatrist should know about lyme disease and the questionaire listing the symptoms that lyme causes us physically, emotionally and mentally--I have 95% of them. I open my mouth and replacement words come out of left field or I studder hopelessly trying to say the word table.
when on iv abx my herxing was more emotional at times than physical. It seems the antibiotics kicked the keets back into action or something. all I know is I am totally out of whack.
It is depressing. There was actually a while there in the past three months that I thought I would be back at work doing my ultrasounds and passing my physics exam needed to return to work without much trouble and I have turned into a bumbling idiot again in a matter of a month--incidious disease isn't it??
With my liver problem, I have NASH so bad that I cannot take any medications not absolutely necessary or any vitamins but vitamin E. My enzymes keep going up even though I am dieting, loosing weight, exercising as much as I can. My cholesterol is over 300, triglicerides over 400 and my sugar is high--these are all recent developements since on IV and oral antibiotics for lyme. My cholesterol total was way under 200 1 year prior to treatment and my liver enzymes were always normal (3 years ago)
Frustrating as heck--the cure about killed me. I have a liver transplant specialist who said that he has had patients in liver failure from ketek which was one of the orals I was taking after 8 months of iv. I was taking it at 3x's normal dosage for 3 months along with another oral. Who knows-no one is sure when the final insult happened to my liver--it seems that something within the last year was the straw that broke the camel's back.
Lyme, fibromyalgia, arthritis, endometriosis, spinal fusion for degerative disc's in 4 vertabrae, acl reconstruction on a knee,interstitial cystitis, depression, anxiety, syndrome X--and NASH--oh yeah--MY FAILING MIND--seems like I was in the wrong line when they passed out adversity. I guess what does not kill me will make me stronger.
Anyway--sorry so long-it is just that I can type thoughts much better than I can speak-so I had a lot to say.
Write back and laugh with me, cry with me, feel sorry for yourself with me--or just complain. I am here--in body anyway--ha ha
Cathy
I miss my mind. I was a highly functional human being for years who could do 10 things at once let alone two--now adays I find it hard to fight my way out of a paper bag.
I am frustrated as he**. My kids started school today and just the paper work--simple things like students name, I was putting my own. I could not remember my address and phone number, I had to reread simple questions 4 times to answer and still could not at times.
then took the teenager to get her supplies for school she needed by tomorrow and got to the store only to find out the wallet I KNOW I put in my pocket was at home.
guess I cannot type as well as I thought-the previous 2 thoughts were supposed to be in the beginning
I like your typing your thoughts, because it makes me feel a bit better about the same things. The mental, emotional, and physical stuff that goes with this stupid disease.
Little remarks made by others, are beginning to set me off again, and things that the dear husband does, just puts my mind in overload.
It is hard to shake it, isnt it.
I know the kids are taken care of, but make sure you take care of yourself.
My emotions are off the chart. Boy, i slammed doors and screamed at my husband this week. i think that in our twenty nine years of marriage, you can count on okay maybe two hands the times i exploded with him.
Had a heated argument with my mom today. I have always been the passive child, but i think the lyme disease is helping me get rid of the passitivy, if that is a word. So maybe on that end of it, lyme isnt so bad, if it helps me blow up once in a while.
i know it is hard on you fighting this with the kids and everything you have to go through to be well, and then take care of family. It sounds to me by what you write that your doing a fine job.
you talk about your words, i am having the same problems. Funny, but i am now inventing new words, they are two words stuck together to form a new word. It is pretty funny, but a bit disheartening to know that two years ago i was writing research papers, and now.....okay now i am doing work for religous retreats so maybe God sent the tick my way for a reason.
Take care sugar and send me an email ifyou want. I am in south texas, and you have my profile. call me pointless in texas
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I am trying to figure out the real reason God gave me this. That's it. I don't mind relising in some of it once in a while. Freaky though are all the things going on in my body which have increased over last couple months.
So this is quite a battle.
How did your spinal fusion go? I had laminectomy a year ago and still have the same or worse pain. Can't stand for more than 15 mins. before I have back pain and legs go numb. No dr. can figure out why. There is nothing physical there in xrays and MRI.
My kids started back and boy what a day.The night before we did not get any sleep.
A young lady,driving drunk had an accident in front of our house,car landed upside down,lucky for her,she walked away.That was the start to our school year!!No sleep.
Then they piled on homework,My mind was not in tutor mode but had to give it the college try,we survived.Did send me to bed early.At least my mind is still getting a little exercise.Ha!!
I hope you feel better,you are not alone in this stuff.I hope the schools,if needed can offer help for kids when needed?
I too had the barage of paper work,got to sign your life away now,and with internet access,sign every form every lawyer has ever made??It is crazy now.
Well,hang in there,do it at YOUR pace,it will come together.
IV glutathione ?
milk thistle?
Just some ideas for you to research?
It thru humor at the moment...made it less dramatic or negative.
I would suggest sauna and rife otherwise...you poor dear.
May I ask....what level of Ketek you weere taking...as I am currently on it also.
I am doing both....for you...laughing with you...and mourning at the same time.
Trout
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Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info
I feel for you - my mind is often found wandering the streets or chasing butterflies.
If you're into thye possibility of alternative therapies, one that has really helped my liver is doing liver cleanses. The one I do is at http://www.herbdoc.com It is amazing for flushing out gunk from liver/gallbladder safely and gently but effectively and restoring liver function.
Thanks for sharing your story. I am really tired of typing all my letters backwards, myself.
Alison
As far as alternative therapies, I am on the fence because I have seen the reprocusions (sp?) of people doing liver cleanses, herbal and vitamin regiments etc--the result has ended in liver transplant. Being an ultrsound technologist and my husband being a CT, MRI and Interventional Rad tech we have seen the negative effects so many times, it scares me.
Now sauna and Hyperbaric chamber treatment is something I am bringing to my NP at the Jemsek clinic on my visit this thursday.
I have changed my eating habits to no sugar, white flour, etc etc. Only healthy things and lots of veges and fruit, fish etc. I am walking reguraly and swimming a couple of times a week--when my body and mind cooperate.
Last visit with Jemsek, they wanted to put in another pic line, thinking IV would be less harmfull--liver doc says absolutely no way or I am heading for a transplant down the line--so I quess I do the best I can living with the circumstances.
Of course the almighty dollar has to do with anything "alternative". I have not worked in almost 2 years and we lost over half our income by me not working--SSDI-turned down and appeal turned down--my court date is a year and a half away--ah the wheels of justice.
anyway thanks agin
Cathy
quote:
Originally posted by janeymae:
grisworld -How did your spinal fusion go? I had laminectomy a year ago and still have the same or worse pain. Can't stand for more than 15 mins. before I have back pain and legs go numb. No dr. can figure out why. There is nothing physical there in xrays and MRI.
My fusion was on c4-5 aqnd c6-7. It was in 2000. I still have pain. It is better when I keep my muscles in shape and work out reguraly-that has not beeen in the cards lately-been too ill. I am on a fentanyl patch for pain for that and my knee and general bone and joint pain.
It did help at first as I said--but it is important to build the muscles around the spine to help.
cathy
quote:
Originally posted by troutscout:
Your spiriti is HIGHLY visible...what a rock you are.
i remembr just alughing at myself...all the time...only way i could cope I would say.....Oh, Lymie (Out Loud) and laugh.It thru humor at the moment...made it less dramatic or negative.
I would suggest sauna and rife otherwise...you poor dear.
May I ask....what level of Ketek you weere taking...as I am currently on it also.
**********I was on 800mg every other day for 4 months on and off***** it was right after finishing my iv"S--liver enzymes started jumping so I kept taking breaks and getting back on--it was that situation that made me seek a third opinion ion my liver--my lyme clinic would not send me for an ultrasound-so I went to my GI doc--had a biopsy etc and no one could tell me exactly what was the problem until I saw the guy I see now. I have written in ketek buddies my opinion on this drug under medical questions
cathy
I am doing both....for you...laughing with you...and mourning at the same time.Trout
It was dated Dec.. so don't know if anybody already posted it.
MSNBC, Newsweek International.