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In a message dated 6/3/03 9:25:42 PM Central Daylight Time,

writes:

>

> Karrie has days in a row where she is almost unbearable.

> Then there are times like these....

>

> This morning, she was putting her socks on. She came to me and said, " help

> me please. Sock backwards " .. It was on wrong side out, but that was close

> enough!! After I helped her, she said, " thanks a little " . Then laughed and

> laughed.

>

> She just came into the room with a piece of a microphone stand that is about

> 18 " long with little holes along one side. She had it held sideways up to

> her mouth and said, " look I play flute " . Then she bowed and said " thanks,

> ladies and gentlemen " .

>

> Guess she knows when mom has just about reached her end and that she needs

> to provide some cuteness.

>

> Sue mom to Kate 13 and Karrie 7 w/ds

Sue,

Have you had her checked out by the dr. when she is acting difficult? I know

that fluid in 's ears caused lots of behavior issues and most of the time

it would resolve on it's own leaving me wondering what had changed.

We have been having a difficult time with the end of the school year

approaching. just needs the structure and routine and it is gone by the

last

week of school.

Karyn

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  • 1 year later...
Guest guest

I think your doctor is being very up front with you and that is a good thing. Let us know what they find after your MRI. If they find out your brain is missing we will put out an A. P. B. WE will not let you down we will find it....lol I think it is also good that your doctors are talking over your current issues. That way the surgeon can handle his side without having any surprises. Keep your head up and I will keep praying that the tests come back for the better and that when you go in for surgery that all goes as planned nad you have a quick recovery.

in Suffolk

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I would try to make sure that the doctors are confident that you have the disease. There is no reason they should be grasping at straws. I would ask them hey if you are not sure then what tests should be done to make sure or should we get some other specialist involved to confer with. I would not worry to much, the scarecrow did get his brain with the help of some friends so here we go..... Hey all were on a quest to help Kathie find her brain...... LOL

in Suffolk

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Guest guest

,

Thank you for your kind words. I have been operating without a brain

so long, I guess it does not really matter.

Seriously, I appreciate your taking the time to answer me.

This " we are not sure yet " that keeps popping up is concerning.

The surgeon said he would do an EGD before doing the surgery to

make sure it is the LES. I am almost more concerned they will decide

it is not and they do not do the surgery. Then what? Would I start

all over. I am not happy with this diagnosis, but at least I know

what I am fighting. If that is the case .... What Next?

Sorry, you wrote a great response and I keep up with the

questions. " If I only had a brain ................. "

Kathie

> I think your doctor is being very up front with you and that is a

good

> thing. Let us know what they find after your MRI. If they find

out your brain is

> missing we will put out an A. P. B. WE will not let you down we

will find

> it....lol I think it is also good that your doctors are talking

over your

> current issues. That way the surgeon can handle his side without

having any

> surprises. Keep your head up and I will keep praying that the

tests come back

> for the better and that when you go in for surgery that all goes

as planned nad

> you have a quick recovery.

>

> in Suffolk

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Your very welcome. So a hermit too. I am somewhat of one too. I stay home and take care of the house and kids. Not much to do being a male military spouse so I just do my own thing here at the house. I hope all goes well with your upcoming tests. Keep us posted and your head up.... you might find your brain then too...lol

in Suffolk

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Guest guest

Hi :

Thanks ... My hubby would say, if you find a brain that is " like

new " , it is probably Kathie's " .

I bounce back and forth between feeling confidence then feeling

that the rug has been pulled from under me. I probably would not

fight the idea of either disease if I felt terrible ... but, Thank

God, I do not. Aside from becoming a hermit, due to my rather

embarrassing current situation, I am hanging in there. I have the

brain scan on Tuesday ... they said about an hour in the MRI ...

thank God I am not claustophic!

The Neurologist really wants to eliminate the MG from the mix ...

but these 4 pesky symptoms keeps taking him back to it. One of them

was the EEG Test that indicates moderate muscle/nerve changes at the

shoulder and neck area ... 2nd is the fact that I can not resist him

pushing my head either forward or back (weak neck muscles) ... 3rd is

the thing that started this entire nightmare PTOSIS with both eyes

and the 4th is double vision. All 4 of these symptoms are symptoms

for Myasthesnia Gravis ... (along with swallowing problems ... but

they are in the neck not the E). I think I will do this Brain Scan

and then, that is it. I really only have the energy to worry about

one disease at a time.

I am trying now to get ready for the surgery and must admit,

although I am really VERY GLAD it is scheduled, I am nervous. I have

a history of throwing a pulmonary embolism after abdominal surgery

years ago ... and I remember it vividly! Just too much on the plate!

Anyway, , you are a good read and I enjoying hearing your

take on things. Thanks for the input. Kathie.

> I would try to make sure that the doctors are confident that you

have the

> disease. There is no reason they should be grasping at straws. I

would ask

> them hey if you are not sure then what tests should be done to

make sure or

> should we get some other specialist involved to confer with. I

would not worry

> to much, the scarecrow did get his brain with the help of some

friends so

> here we go..... Hey all were on a quest to help Kathie find her

brain...... LOL

>

> in Suffolk

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Hey ....

I was a stay at home Mom for many years! Being a stay at home Dad

is a tough job, and only once you do it, can you appreciate it. I

think it is terrific and I admire you for doing it.

I hope your wife is not in harms way. It is such a dangerous

world, and I, for one, am so grateful to the people of the military.

Kathie.

> Your very welcome. So a hermit too. I am somewhat of one too. I

stay home

> and take care of the house and kids. Not much to do being a male

military

> spouse so I just do my own thing here at the house. I hope all

goes well with

> your upcoming tests. Keep us posted and your head up.... you

might find your

> brain then too...lol

>

> in Suffolk

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Guest guest

I have a crush on you. Are you really so nice? I'm going to

have to quit using the same " toomuchclutter " so I can send you crush

letters.

This is the right right? LOL LOL LOL

Sandy in (oops I'm going to be anonymous now and not say which one or

where I live.)

> Your very welcome. So a hermit too. I am somewhat of one too. I

stay home

> and take care of the house and kids. Not much to do being a male

military

> spouse so I just do my own thing here at the house. I hope all

goes well with

> your upcoming tests. Keep us posted and your head up.... you

might find your

> brain then too...lol

>

> in Suffolk

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Guest guest

Hmmmm..... I might have to just find out what one you are....lol I do not think anyone has ever told me they have a crush on me. Wait let me find a calendar so I can denote this day. lol I am glad I have enlightened your day a little.

in Suffolk

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I feel really blessed that I can stay home with the kids. I think it is important for them to have one of around all the time. I do miss going to a job out of the house at times. My wife's job really does not have her go to hostile areas but then she is in the Air Force so that could always change. I know just how it is when others complain about there kids and the house work....lol. I will let my wife know you appreciate what she does.

in Suffolk

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  • 5 years later...

how to start?? I have been watching the messages here for about 3 months, all

have helped, thanks

My story is, I have had lyme for 30 years or so. the sad part is I didn't know

I had lyme and so my 2 kids also have it. they are 18 and 25. I diagnosed

myself 12 years ago, just couldnt get a doc to agree with me until 2 years ago.

My daughter has had many neck problems, i empathize with the others who have

posted about this subject. the muscles in her neck pulled so hard to one side

that it litterally dislocated her heck bones. She has severe joint pain when off

of antibiotics. she is a performance violin major in college and this causes

alot of problems if we don't keep her on antibioitcs.recently the muscles in her

jaw tightened and she had severe jaw pain. it is always something.

my son, has the severe fatigue and pain, but refuses to admit he has lyme, even

though he tested positive.

As for me, wow, it has been a life of mostly pain and fatigue. I get so that I

just want to go to my heavenly home. I know I can post that here, because you

all understand. after 30 years of fighting this I am so tired. I have been on

antibiotics for 2 years, and started the protocol 6 weeks ago. I am slso on

doxy.

so here is my question, sorry it took me so long to get to it!

I have totally crashed again. could it be herxing or do I need to up the

antibiotics? I am on doxy 800 mg a day. and the core protocal of Buhners. I

am taking 2 of all the herbs 3 times a day. also teasel and stephania. I would

love to get off the antibiotics, however I feel so much better when I am taking

3 different kinds. I am having a hard time seeing that the herbs are working so

I guess I just need to hear that either I need to give it time, or any other

suggestions would be great. I question whether I need to do some detoxing?????

I am self treating at this point, my husband hasn't been working and my llmd is

very expensive and didn't know anything about herbs. so my local doc is trying

to work with me, but it is hard when he doesn't believe late stage lyme exists.

so you all are my final hope to help, sorry to put so much on you, but I really

could use some advise.

one last ? do you think it really matters where you get the herbs from?

thanks so much for all of your other posts, I have been encouraged by you. may

we all beat this bug!!!!!

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>

> I have totally crashed again. could it be herxing or do I need to up the

antibiotics? I am on doxy 800 mg a day.

800 mg, are you sure? that is an awfully big amount, unless you are extremely

overweight ... I had llready trouble taking 300 mg daily.

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I felt horrible at 200 mg of Doxy a day--which a non LLMD put me on until I

could find one .I had gone undiagnosed for 6 years. When I went to the LLMD he

switched me to Amoxicillin 500 mg 3x a day, saying I didn't seem to be doing

well on Doxy. I had a pretty steady improvement on Amoxicillin for 3 months

when I plateaued. Eventually ended up on Biaxin & Ceftin (later IV form,

Rocephin).

Kim

[ ] Re: roller coaster ride

>

> I have totally crashed again. could it be herxing or do I need to up the

antibiotics? I am on doxy 800 mg a day.

800 mg, are you sure? that is an awfully big amount, unless you are extremely

overweight ... I had llready trouble taking 300 mg daily.

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i thot so too, my llnd has me starting doxy and it is 200mg/ morning and

nite. and i have already had 2 yrs. of abx

On Thu, Jan 20, 2011 at 1:57 AM, knot_weed <tek0nik@...> wrote:

>

>

>

>

>

> >

>

> > I have totally crashed again. could it be herxing or do I need to up the

> antibiotics? I am on doxy 800 mg a day.

>

> 800 mg, are you sure? that is an awfully big amount, unless you are

> extremely overweight ... I had llready trouble taking 300 mg daily.

>

>

>

<#> <#>

<#> <#>

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Deb,

I will take your advise and take a few days rest from the herbs. I have not been

doing the detoxing and have wondered about doing that. I will take your

suggestions on that also.

I did start really slowly with the herbs, I started with 1 once a day, and then

the next week 1, 2 times a day, then 1 3times a day, then up from there. I

have just gotten to the 2- 3 times a day.

thanks so much for your inpute.

>>

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