Lately, mine has been really low functioning.
Monday through Thursday, I have a lady come and keep the kitchen clean and prepare a crock pot meal. She is hear for about 2 hours. She arrives around 7:30 am and leaves around 9:30 am.

Sometimes I am able to get up and do a few things also while she is here. It took me an hour but I was able to clear off the dining room table before I had to lay down and rest again from exhaustion.

I have noticed if I have someone here taking care of KP, I am able to get out and about in my power chair for about an hour.

Sometimes, I am able to go for a 10 min walk in the am and again in the evening. I haven't done this in a long time but feel I am slowly getting strong enough to do this again and am looking forward to it.

Most of the time, I am testing the couch and the bed out. I watch TV some and play games on the computer some. The computer is next to my bed so I can lie down while I play.

I keep these times short. I get bored quickly but it does help me to stay down and rest and keep my mind off of how my body is doing.

Focusing and multi tasking usually does not work.

I try to take a bath every other day but it seems that has been stretching out to every 3rd day lately.

Sleep usually comes after midnight although I have been trying to get to sleep around 9:00 pm. I have yet to be able to do this.

I am thankful for those nights when I do sleep through the night. Every now and then I have insomnia. I am not sure how often at this point.

I have noticed that the this condition cycles with infrequent times when I can stand and do dishes normally, go to church or Bible Study or walk normally for short or sit up right for short periods of time, or read, etc.

I look forward to those times.

This has been going on for about 3 years now with treatment and diagnosis the beginning of this year. I think. Or was it the beginning of last year? I'll check my records and get back to you on that.

(I checked my records. It will have been 2 years of different abx in February with some long breaks in between due to difficulty with getting supplies and meds.

Before I came down sick, I put in 40 plus hours at work. I usually kept busy around the house and hardly ever watched TV. I would also take my work home by choice.

I also was able to multi task. I would use a headset for the phone so my hands were free to be doing laundry, dishes, etc while I was dealing with business on the phone or just chatting.

Once a month, I would try to go to the mountains and spend a few days in a cabin.

I noticed that my energy level wasn't up to par while at the cabin. The old me would have been out on a day hike all day. But, I would usually be reclining under a pine tree somewhere reading and relaxing. Then hike down to the restaurant across from the ranger's station for meals. I just thought it was because I was doing too much at work and home and that I would get back to the old me soon. I had no idea my health would go south instead.

Forget about the day it's years, all my life
I don't if it's fortunate or not, but my lyme was below the surface for 20+ years.
Body kept on fighting it with minor symtoms

Since having lyme for so long it went nuro,
about 20years ago. Symtoms started to get more pernounced, believe coused by depression and taking pyhch drugs.

So for last 20 years each of the conditions that you indicated were getting worst each year.

20 years ago pyhch Dr ordered an MRI, one small white blotche.

Had MRI 2 years ago, two white voids.

MRI done last month, 3 white blotches much bigger than previous MRIs shown.

Now I have trouble walking. Have your sleep patterns. Cannot remember my phone number.
Forget names, even wife and daughters.

Taking out the garbage is a chore.

Writing this post takes a lot out of me.

Getting bored quickly, could be lyme induced ADD, yes Kam I have that also.

I don't see you day any differnt from mine.

------------------
Alex

My little one has been seeing the same ENT nearly every month or so for the last year. I could not for the life of me remember what his name was when I was looking up his easy number which I have called numerous times. I had to ask my co-worker the name of MY babies doc!

GEEEZZZZ and his name is Pilsbury! Who could forget that name?

Lots of things like that are happening to me daily. Lots of them are very embarrassing! Especially when you have spoke with someone many times and lives next to your mother and you see them and say, "don't I know you?"

I work in a place where I need to be able to retain names and faces. Well, not happening right now.
Not keeping house very well at all. I live like ....well, I would rather not say. You get the picture.

I do not however (YET) have the major physical pains that you have to endure daily. I just have minor ones all over.

That memory still has not returned. The mind stuff is very difficult. I wonder if I would recognize my LLMD if I saw him out and about. HA!

Alex,

I now use a power chair to help me take out the trash. It has made the job so much easier. Of course there are those days I can walk it out without a problem and then other days when it sits outside the house for several days until I can function well enough to get in the power chair and take it out or someone stops by and takes it out for me. This is during those times that I am without an in home health care person.

My day is trying to get her up to go to take the 3 classes that her principal allows her to take so she might graduate..It is a constant argument over taking meds, eating and drinking.

All day after school she crashes and then in the evening we start the arguing all over..She is currently worse and sees no reason for meds since she feels she is going to die anyway..With type 1 diabetes, she adds that it will be without body parts..

Months ago we had horrible nightly herx's..She goes into this hysterical crying and out of this world moaning..She is often violent and is suicidal..It has returned for the past 2 nights and when I intervene, I become the target..2 nights ago she tried to slash me with her uncovered lancet and then kicked me.

Last night she grabbed for her picc line.. I went "nuts"..I got a couple of tight fisted knocks to my head when I intervened. Later when she was "saner" she said she wasn't really going to rip it out..Just knew it would get me upset..

your daughter's symtoms sound like bartonella symtpms to me, a coinfection of lyme which can affect the frontal lobe of the brain which affects the emotions of rage, anger etc...I know, I watched my son go through it, and many moms on here have had similiar situations iwth bartonella.

has she been tested or treated for bartonella? Dr. jOnes is the dr. I credit for treating and saving my son from all that finally..he's doing wonderflly now..but for about 6 months we went through very similar days and nights..it' was very scary...the cause was bartonella..attacking that part of hte brain...

you need very specific meds for this coinfection....so if you're not already heading down this road, i would look into it seriously..ok? I feel for what you're going thoruugh..I remember those days all too well...

JC's neuro symptoms are a DAILY rollercoaster.

It is very tough figuring out what is lyme, herx, co-infection (bart), med related.

Some days, or parts of the day, he is very lucid, calm, cheerful, people-connected with fluid speech, self-directed attention, mentally and physically active.

At other times, any or all of the above can go south fast.

His symptoms are exponentially worse with fatigue! Which of course invariably happens at some point during the day no matter how hard I try to build in rest periods.

The "bad" times can hit morning, noon or night.

So he might be in a fog, unable to focus, confused about reality, experiencing brain tremors, inconsolably sobbing and upset, stuttering and unable to get sentences out, clinging to me like he's drowning, exquisitely stimuli sensitive and exhausted.

And everything in between.

Sometimes, I wish I could just give him a tranquilizer so he could sleep through the misery.

I usually just hold him and rock him in my arms till it passes. Sometimes minutes, sometimes hours.

Currently on IV rocephin, oral zith and tenex (to reduce brain inflammation and improve blood flow to frontal cortex).

We definately want to address the bartonella factor (rifampin) but JC is only six and Dr. J wants to wait on that.

We see Dr. J this coming Tues so maybe that will change. His rocephin has just been extended by insurance for another 2 months.

If we can get him stabalized, later we'll try to segue to biaxin & plaquinil.

My heart goes out to everybody dealing with this stuff.

Also have a great llmd who studies under Dr. J..We hopefully are on the right tract..It is just long and dangerous..

Andie, 1/2 Valium as needed has helped most of the time with my daughter..Not sure if someone so young can take it or not. My daughter is 17.

I am glad you have people who know about lyme disease helping you. This is good.

I know I have seen my behavior change as an adult. But, since I had years of experience behind me, I am able to stop and try to figure out what is going on.

I can only imagine what it must be like for a teen who is experiencing all of this for the first time along with the "normal" teen stuff.

I have learned to cope by being a hermit for the most part and trying not to over do things.

I really don't like people and am very impatient when I am struggling.

I also back off the meds at times and thankful that has helped. But, it takes a while to figure out what is going on in order to know what to do to help.

There is so much going on inside the body that it all gets muddled and unclear.

I have found the keyboard really helps me to do the thinking that I use to do in my head. It also helps me to problem solve.

OK. Now on the lighter side. I am sending my limo and driver over to take you away from all of this.

You will not worry about your daughter as she is also bringing a wonderful, competent person to take care of her while you are out.

(Note: this person will be removing all lances and other hazardous things as hazard pay is not part of the plan. The PICC line will be wrapped also with one of those colorful stretch wraps while not in use.

The limo and driver will be coming to pick you up right after lyme mom too's retreat....unless the two of you want to go together.

You do need to recharge your batteries too.

I know what you are all going through and it breaks my heart..trust me to say that dr. Jones is a godsend...he will make them better...there is a light at the end of the tunnel. Jordan is now 11 adn playing tennis and on a baseball team. He's back in 6th grade and getting great grades again.

THere is hope..so hang in there...I know it's hard to imagine...

Lisa

HOw about OC, MD and going back 35 years? Andie are you game to join me. Ha!! Kam, you can come too and you won't need your chair..I had a friend with a small sailboat..

I didn't read everything, but when I had this kind of fatique, a liver protocal and primal defense with abx, got me off the couch in about 2 weeks. Wonder if you have done something like this.

I was unable to do anything and was literally dying, and then when I could I would drop and sleep like 2 hours from cooking a small meal which was pushing myself.

Thanks so much for the kind thoughts and smart ideas.

I see Dr. J with JC tomorrow am!!! I'm so excited!

I'm going to ask him about the rifampin/mino for bart; Dr F also suggested plaq/biaxin for the lyme. Arg.....

Meanwhile, JC has had such severe daily mental and emotional collapses he's been given a lyme induced bi polar psychosis dx from all the LLMDs and is starting an antipsychotic.

At this point I'll take anything that makes him feel better.

Yesterday's episode came out of nowhere (as usual)at 2 pm and lasted until 4 am!! He's starting to become violent with himself.

When we try to talk to him when he's in an episode he doesn't even hear us...its like a seizure.

Where would I like to go....? Far away with a happy, healthy JC to a Disney kind of place filled with all his favorite things: Flying on a celestial magical ride that's filled with stars and lots of sunlit prisms casting colors everywhere. And of course, puppies and Spongebob. OH yeah, I almost forgot.... Lots of quarters for those stupid machines that spit out all manner of plastic whatnots and candy.

After that, for me: I'll take powder soft sand, turquoise surf in a steady ryhthm on the beach, gentle breezes under the shade of a palm tree, the smell of coconut on the hands of my DH giving me an endless massage who of course feels incredibly lucky just to be able to touch the pure Godessness that is me. Yeah...that would do it.

love ya,
andie

I peek open my eyes in the hopes that dizziness and vertigo isnt there. FOrce feed my lymed kids their meds , which half the time, my autistic son spits on me,

and by 830, they are all off to school. I shower at night and set my clothes out then because honestly, with or without lyme, my showering in the AM isnt working. I forgot to mention, 99 percent of my morning is

trying to get my autistic son to stop either turning on and off the lights, climbing in the oven, opening and closing the refrigerator door, or biting, kicking, scratching and punching me. Im actually HONORED and sooo relieved to get to work

at 9, I dont know what to do with myself.

By 2, Im falling asleep at my desk and have horrific head pain. I come home at 430-500 and on a good day, ( thank goodness I am now having these) I stay up until 10:00 doimg chores that never got done.

On a bad day, the live in has absolutely no problem watching me drag my cover from the living room into the bedroom, and I sometimes dont wake up til 7-9 pm.

Then I get on here and look at all your heads.

On a herxing day, I pull out my shirt that my kids made me that ssays "mommy is herxing". They know better and they fully understand that if I am wearing that shirt,

NO i am not playing barbies, reading books, driving your toys across the floor or helping you ride your bike in the playroom. They basically let me alone. I curl up in the recliner with my "Sick tray"

and do whatever, but none of that includes move, or talk. I have an awesome tendency to become very mean, hostile and rage when Im herxing, so Im best left alone.

For a joke, my live in taped a white tissue to a corn dog stick and when I become to mean, he waves it to signal he surrenders. I usually just huff my way to the bedroom, get out of his face, and he stays out of mine.

I've come a VERY very long way from the times that I would constantly lay in bed, and my live in ( he was my fiance, hey lyme and just him being a brat can do alot)

and my mother would come over to help me go to the freaking bathroom and the tub, etc. I never moved, I never did chores. By the time I was out of the bed, my daughter was a year older and had lost some of her teeth. I had no clue what had

gone on for the months I was down, and I really didnt care. Jon spent more time sitting at the edge of the bed watching me sleep wondering if I was going to die then he did to the house and kids, etc.

Family came over ( I shouldnt say family, it was just my mom and sister) and cleaned and cooked for me.

Somehow, I managed to work nine months like that. I quit a week after I slammed into a parked car ( new car) which was also the week I got my LD diagnosis. I spent the next

four months in bed while my niece babysat my kids during the summer months.

I never ever want to go back there again.

Nowdays, my biggest problems are fatigue, and head pain and pressure. But at least I know how old my kids are again, just somedays, I could care less.

I enjoyed reading your imaginary mini mind vacation. I sure hope it comes true...and soon.

Sorry to hear he had such a rough time of it for those 2 hours.

I liked your idea of wearing the herxing shirt. This is good. Surviver skills.

When I read about the lack of energy, dizziness, vertigo and head stuff, I was reminded of the 90's for me.

I was still working or going to school at that time. But, I also was dealing with those symptoms. I had gone to doctor's but they couldn't really do anything about it.

It is good you are getting treatment now. I wonder if anyone has done research on the steps that lyme takes as it progresses without treatment.

I am doing better lately. I am beginning to notice how much it helps to have a good in home health care provider come for two hours a day.

I was able to take a bath, get dressed and almost fix myself breakfast this am.

I had to rest in between each task but at least I was able to do these tasks and I don't stink now.

I hope to be able to do a little bit more this afternoon.