Re: Fog Rolling In

[Guest guest]

Hi

I used to get them quite often in the beginning. they aren't as severe now.

I would just keep wondering until my memory came back. I always thought

people knew that I didn't know where the heck I was. But it would pass. Now

when it happens I just wander and wait. Good Luck,

Connie

[Guest guest]

Hi

I do that quite often and it is soooooo aggravating!! I have been at the

mall and come out and swore someone stole my car. I even went to mall

security once and had them call the police ... only to discover my car about

10 rows away from where I thought it was.

I was working on the newsletter at my office last week and sat there in

tears because I couldn't figure out how to do it. Now, you have to realize

that I have been doing it for quite awhile and totally had NO clue what I

was doing. I finally just gave up, put it on a disk and brought it home so

my husband could work on it that evening.

Some nights when I am cooking dinner I forget how to cook. No idea

whatsoever how to do anything. Some of the meals we've had have been pretty

strange. But bless his heart, my hubby just eats them and doesn't say a

thing. :-)

So yeah, it does happen and it is depressing, aggravating, frustrating and

every other " ing " word you can think of. Hang in there!!!

Ann

>From: Scully <jscully@...>

>

>Last night I spent 15 minutes wandering around the

>grocery store because I couldn't figure out how to

>find the aisle where the cookies were (I just

>couldn't quite figure out what I had to do in

>order to find them -- I kept going back to the

>baked goods section and walking around in a stupor

>until the fog lifted a little and I thought, well,

>maybe if I go to a DIFFERENT part of the store,

>they'll be there. So I walked around some more

>until I stumbled across them.) Then I had to

>figure out what kind to get -- I was at a local

>coffeehouse where I volunteer, and I had run out

>at break time to get some more refreshments. That,

>of course, was another tortuous decision process.

>

>My question -- 10 minutes before, I'd been pretty

>normal. I found the store with no problem, etc.

>After I left the store I was depressed and upset

>for about an hour, and I still felt really

>impaired about two hours later. This is the worst

>state I've been in mentally in about two and a

>half months.

>

>I had been having some kind of strange flare of

>symptoms (a herx maybe?) during the past two days,

>but this is the first time I ever had a sudden

>onset of mental impairment like this. Has anyone

>else experienced such a thing?

>

>Jean

[Guest guest]

Hi

Yes!!!! I know exactly what you mean, I have noticed that when I enter

my pharmacy to pick up my drugs (too often) I get discombobulated too. I

think in my case it is the florescent lights. The ceiling in that store is

lower than most that I shop in, and I think when I see the lights (even with

sunglasses on) it effects my brain somehow. I also have florescent lighting

in my kitchen, and a lower ceiling. I notice I am really inept trying to

figure what I want out of the fridge or cooking in general. I have low

lighting in my computer room and somehow that seems to help me. What were

the lights like in the store you shopped in???

Marta

>From: Scully <jscully@...>

>

>Last night I spent 15 minutes wandering around the

>grocery store because I couldn't figure out how to

>find the aisle where the cookies were (I just

>couldn't quite figure out what I had to do in

>order to find them -- I kept going back to the

>baked goods section and walking around in a stupor

>until the fog lifted a little and I thought, well,

>maybe if I go to a DIFFERENT part of the store,

>they'll be there. So I walked around some more

>until I stumbled across them.)

[Guest guest]

jean, i know the feeling , my days since i became totally disabled consist of

getting up,(variuos times) driving 1/2 mile to the market for a few things and

the newspapers,,,, my big day out...lol......sometimes i have to sit in the

parking lot for a while so i remember how to get home.......i have to be very

careful anymore when i drive......use to drive big trucks month ago i ran into

a sign post in a parking lot......i just have lapses sometimes.....it is

normal in nuerophysc lyme and late stage.....but it sure is weird.....going

somewhere then not remembering why......oh well....all i can do is laugh about

it anymore i don't get depressed over it i suffer with enuff problems from

depression....i find anymore i laff at myself alolt....my wife gets mad " how

can u laff about what u are going thru " if i don't i'll cry.....laughing is

better.......she got really pissed when i told her the joke marta put on about

the easter eggs...........chin up.....

Reid

[Guest guest]

Marta what you said about the lights really made sence. I always get foggy in

Malls or stores that are open spaced and have bright lighting. I am glad to

know someone else had that too. It must be another crazy symptom of lyme. When

I am in darker settings I function much better. Weird huh.-Val

[Guest guest]

Hi Reid,

Sorry that your wife doesn't understand that sometimes if we don't laugh

about the hard times, they get harder. Humor is so important I think when

we laugh even for a few seconds, we forget about our aches and pains, it's

very therapeutic. I am so neuro, I don't recall posting the Easter egg joke

to this list! I think it was Dr Leigner who told about one of his patients;

who when told about her Lyme affecting her memory, she shrugged her

shoulders and said " Well, at least I can hide my own Easter eggs now. "

Those of us with short term memories can get a chuckle out of that one. At

the Hartford conference, I read there was a comment by the neurologist in

his speech, I am paraphrasing it here; he mentioned how people with Lyme

disease who suffer neurologically are suffering due to lack of treatment

that the HMO's are denying, he said the insurers drag their heels until the

patient is in dementia, and then they can't talk to the patient anymore. I

heard that the audience let out a roar of laughter, and Atty. Blumenthal was

shocked. Well, there is a bit of dark humor there, and sometimes that is

funny too.

I guess the audience got it and the AG didn't.

Hugs,

Marta

-

>From: RMcmur3194@...

>

>jean, i know the feeling , my days since i became totally disabled consist

of

>getting up,(variuos times) driving 1/2 mile to the market for a few things

and

>the newspapers,,,, my big day out...lol......sometimes i have to sit in the

>parking lot for a while so i remember how to get home.......i have to be

very

>careful anymore when i drive......use to drive big trucks month ago i ran

into

>a sign post in a parking lot......i just have lapses sometimes.....it is

>normal in nuerophysc lyme and late stage.....but it sure is weird.....going

>somewhere then not remembering why......oh well....all i can do is laugh

about

>it anymore i don't get depressed over it i suffer with enuff problems from

>depression....i find anymore i laff at myself alolt....my wife gets mad

" how

>can u laff about what u are going thru " if i don't i'll cry.....laughing is

>better.......she got really pissed when i told her the joke marta put on

about

>the easter eggs...........chin up.....

>Reid

[Guest guest]

i guess i am in to dark humor........i find my diseawse funny??????/how else

could i handle it......god gave it to me i guess cause he knoiws i would find

a way to cope......bless u all

Reid

[Guest guest]

Marta, I noticed your posting to neuro lyme. My question is what should I be

asking my DR to do? I am currently on Zithromax 600mg and 200mg of Planquinal

(sp?) I have had neuro lyme right from the beginning. A lot of my symptoms

have gotten better since the 3 rounds of mepron and zith, along with my

current treatment. I am scared I find my thought process falling apart now a

days. I can't comprehend directions or even simple tasks. I am grasping at

straws for we won't be going to see anyone until the LDF conference in NY at

which time my PA is hoping to hook up with a new doc for my doc who dx me is

being a jerk and won't work with her. I just can't hope on a plane everytime

I need help, heck he won't even return my phone calls let alone my docs. My

own personal PA is doing everything possible to help me, but is learning as

she goes. She is willing to try anything with in reason. I asked DR

in the chat the other night what stage lyme he would guess I have since its

been mostly neurologic from the start and he said late stage. I am sorry

about rambling on, especially since I have not participated a lot lately in

the group, but unfortunately my lyme brain is making it terribly hard for me

to function right. Please let me know what you think.

Hugs

Amy

[Guest guest]

Hi Amy,

I wish I had some answers for you, in my opinion people like you and me

with neuro problems and Late Stage Lyme should be given the benefit of

unlimited IV drugs until the problems clear up for at least a month. I

myself, have only had the benefit of 6 weeks of IV, last year in January of

98. Two weeks after the IV was finished, I felt terrific, I felt like the

old me but unfortunately it only lasted 2 weeks. I have yet to find a

doctor in my insurance plan who will administer IV drugs to me. I am seeing

a Lyme literate doctor but he is afraid of the insurance companies, and my

carrier Aetna US Health Care is one of the worst and is targeting doctors

who treat Lyme patients anyway. I have had neuropsych testing that shows I

have deficits that relate to the lesion on my brain. I had a doctor

certified bullseye rash, positive serology to Lyme and to HME, but it gets

me no where. Sad isn't it? My home health nurse told me that my insurance

company is not only targeting Lyme patients but also AIDS patients who

require IV therapy of a drug that will prevent some of them from going

blind. It is a cruel world.

You are on a much better regimen of drugs than I am. I am only on 1500mg of

Ceftin (generally used only in early Lyme) and 250 of Zithromax daily.

Marleen (Lymefighter) has recommended an infectious disease doctor to me,

who may put me on IV, he is too far away for me to drive, but I may look

into going to him.

Whoever said " A mind is a terrible thing to waste, " wasn't talking about

Lyme patients, but he may as well have been.

I am so glad you have such a good PA and have the opportunity to attend

the conference. I just pray you hook up with a good doc there who will help

you. Don't apologize for not participating in the group due to your neuro

problems. We all have good and bad days, myself included, when you are up

to writing you do, when you are not, you just read it and try to comprehend

it best you can. Did you know we have 89 list members subscribed to the

list now???

Hugs,

Marta

>From: A1M1BISHOP@...

>

>Marta, I noticed your posting to neuro lyme. My question is what should I

be

>asking my DR to do? I am currently on Zithromax 600mg and 200mg of

Planquinal

>(sp?) I have had neuro lyme right from the beginning. A lot of my

symptoms

>have gotten better since the 3 rounds of mepron and zith, along with my

>current treatment. I am scared I find my thought process falling apart now

a

>days. I can't comprehend directions or even simple tasks. I am grasping

at

>straws for we won't be going to see anyone until the LDF conference in NY

at

>which time my PA is hoping to hook up with a new doc for my doc who dx me

is

>being a jerk and won't work with her. I just can't hope on a plane

everytime

>I need help, heck he won't even return my phone calls let alone my docs.

My

>own personal PA is doing everything possible to help me, but is learning as

>she goes. She is willing to try anything with in reason. I asked DR

>in the chat the other night what stage lyme he would guess I have since its

>been mostly neurologic from the start and he said late stage. I am sorry

>about rambling on, especially since I have not participated a lot lately in

>the group, but unfortunately my lyme brain is making it terribly hard for

me

>to function right. Please let me know what you think.

>

>Hugs

[Guest guest]

Dear Amy: I take it you had babesia as well as lyme from the

Mepron/Zithromax combo. Is that gone now? You may just need to

rebuild those red blood cells. Another factor in neuro lyme is the

stealth virus. I had all of your symptoms, and am now on Biaxin,

tine and Valtrex [anti-virals] and many of my foggy brain issues

have cleared up, although not completely. Let me know how you're doing.

Lovette

[Guest guest]

Thanks Marta, do you happen to have DR # ?? I am looking for a doc

who will work with my doc by phone to help me with this issue. Take Care

Hugs

Amy

[Guest guest]

Hi Lovette, I am not sure if the babesia is gone, have had 3 treatments for

it, but who knows, my doc is questioning testing me again. I am just hoping

to find a doc who is willing to work with my doc by phone so that I can get

some help soon. I went this morn because I can't tolerate the stomach thing

going on and because the chest pain is back in full force, All of my symptoms

are on the rise again from burning, pins and needles, numbness again ect. The

brain fog is the worst, I think its time to look at other meds and see what I

need to do, but of course that requires a good doc. Don't even want to bother

with the jerk I'm seeing, for he won't even return phone calls.......Boy I

think I'm ready for the nut house, along with about a months sleep. Don't

know how much longer I can take this.....I think I'm on the end of a rope

that's ready to break. Sorry to be so negative, especially when you have

children with lyme, my health is nothing in comparison with your child's

safety. Thanks for caring and asking. BY the way I don't think I have ever

been tested for Sheath Virus, not sure if that would show up in the Blood PCR

or not.

Hugs to you

Amy

[Guest guest]

In a message dated 3/6/99 3:41:53 PM Central Standard Time, jscully@...

writes:

<< I had been having some kind of strange flare of

symptoms (a herx maybe?) during the past two days,

but this is the first time I ever had a sudden

onset of mental impairment like this. Has anyone

else experienced such a thing? >>

If I let myself get emotionally upset or stressed I can experience a big flare

right away. My wife and I don't fight that often but when we do I might as

well head for bed.

[Guest guest]

Lea, thanks for your reply. I talked to office today, and we are

gonna do a conference call soon, I pay him 150 and he takes me on as a phone

patient looking at all my test results and works with my doc to insure safety.

Amy

[Guest guest]

Opps I also called Danta's office and he is only in once a week, and doesn't

have any openings until July.

Hugs

Amy

[Guest guest]

Dr. 's number I believe is 203-894-9418.

I believe Dr. Donta of Boston works with your MD

good luck

lea

A1M1BISHOP@... wrote:

> From: A1M1BISHOP@...

>

> Thanks Marta, do you happen to have DR # ?? I am looking for a doc

> who will work with my doc by phone to help me with this issue. Take Care

>

> Hugs

> Amy

>

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[Guest guest]

Hi Amy;

You are quite welcome; I am glad that he took you on as a phone patient (last I

knew, he had to see the patient first---maybe he has become so well know with

all

the publicity lately that he is now doing this).

best of luck

lea

A1M1BISHOP@... wrote:

> From: A1M1BISHOP@...

>

> Lea, thanks for your reply. I talked to office today, and we are

> gonna do a conference call soon, I pay him 150 and he takes me on as a phone

> patient looking at all my test results and works with my doc to insure safety.

>

> Amy

>

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[Guest guest]

I wonder if your insurance would cover the $150 phone charge? It is a

legitimate cost for healthcare.

On Wed, 10 Mar 1999 05:09:15 -0500 " Marta McCoy " <mlmccoy@...>

writes:

>From: " Marta McCoy " <mlmccoy@...>

>

>Amy,

> Is that $150 a one time charge? Sorry I did not see this reply

>before I

>answered you....

>Marta

>

>

>>From: A1M1BISHOP@...

>>

>>Lea, thanks for your reply. I talked to office today, and

>we are

>>gonna do a conference call soon, I pay him 150 and he takes me on as

>a

>phone

>>patient looking at all my test results and works with my doc to

>insure

>safety.

>>

>>Amy

>

>

>

>

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[Guest guest]

Amy, I sent this number to you via private email.

Hugs,

Marta

-

>From: A1M1BISHOP@...

>

>Thanks Marta, do you happen to have DR # ?? I am looking for a doc

>who will work with my doc by phone to help me with this issue. Take Care

[Guest guest]

Stress is a killer regardless of the disease. I was all worked up about

going to my SSDI appeal hearing and was having chest pains, palpitations,

etc. Not to mention additional aches and pains. I have to agree with

Golfdawg here.

Marta

>From: Golfdawg@...

>

>In a message dated 3/6/99 3:41:53 PM Central Standard Time,

jscully@...

>writes:

>

><< I had been having some kind of strange flare of

> symptoms (a herx maybe?) during the past two days,

> but this is the first time I ever had a sudden

> onset of mental impairment like this. Has anyone

> else experienced such a thing? >>

>

>If I let myself get emotionally upset or stressed I can experience a big

flare

>right away. My wife and I don't fight that often but when we do I might as

>well head for bed.

>

[Guest guest]

Amy,

Is that $150 a one time charge? Sorry I did not see this reply before I

answered you....

Marta

>From: A1M1BISHOP@...

>

>Lea, thanks for your reply. I talked to office today, and we are

>gonna do a conference call soon, I pay him 150 and he takes me on as a

phone

>patient looking at all my test results and works with my doc to insure

safety.

>

>Amy

[Guest guest]

Yes, and he will defiantly work with my doc. He usually requires that you

come to his office first, but because of my current circumstances he is going

to do a phone conference with me and my doc.

Hugs

Amy

Sorry for replying again on the last one see bad brain fog

[Guest guest]

I will let you know, for I am gonna push the issue.

Take Care

Amy