update

[Guest guest]

Oh, Marta, I'm so sorry you've been feeling so bad. I really do hope you'll

let us in on it next time. With depression, it's such a vicious cycle

because when you feel so bad you imagine that nobody wants to hear about it,

then you get isolated, then you feel worse.

A couple of weeks ago I fell into a REALLY BAD pit for a few days. Most of

me wanted to crawl deeper under the covers but some little voice in the back

of my head said (because I've been there so many times) " Make a few calls,

reach out. " It really helped. Upping my antidepressant dose and getting

through my period helped as well.

Also, BTW, I am guessing that some of my darker depressions have been Lyme

symptoms and/or herx. I don't know if that's true for you.

At any rate, we all know what the reality of this illness is. Some of us

have it worse than others, most of us have times when we feel like were

sliding back, most of us have times when we feel like we're making headway.

I don't think it's your responsibility as list moderator to be a cheerleader

for us. We can all take on that role when we can and we can't others of us

will. I really pray you get the treatment you need and that insurance

covers.

Don't give up!

One of your fans,

beth

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

or equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 4 wks IV Rocephin, Rocephin oingoing

Live in San Francisco

[Guest guest]

In a message dated 10/27/99 8:11:15 AM Eastern Daylight Time, BratDet@...

writes:

<< Marta, Has USHC declined you b4? My husband and I both got 12 weeks IV

therapy paid in full by AUSHC....they do pay...

they have paid every bill for every test.....<just trying to give you hope

here> Bernadette

>>

Hi Bernadette:

Did you and your husband have a positive western blot?

thank you

Lea

[Guest guest]

In a message dated 10/27/99 6:50:43 PM Eastern Daylight Time, Memyo@...

writes:

<< Hi Bernadette:

Did you and your husband have a positive western blot?

thank you

Lea >>

I was not positive by CDC criteria...I had 4 bands...and seroconverted while

on IV to 8 out of bands positive...

my husband also was not " CDC " positive ...think he had 3 or 4 bands...have to

recheck....get back to ya when i dig out the papers....Bernadette

[Guest guest]

Hi Marta,

Just because you are the list Moderator, doesn't mean that you are not

entitled to the same support and friendship that the people on this list

offer to everyone else! You are especially deserving of it for being

there for all of us! Don't feel that you have to encourage us all the

time. Just havng someone listening helps.

I agree that reading about the problems that our fellow Lymies suffer

from sometimes depresses me too...but it shows me that other people can

relate to my problems. We've also seen examples of people on the list

who have been able to return to work, so it is not hopeless.

Keep pushing for the IV abx. I have paid out-of-pocket for tests done by

Igenex. Sometimes it is worth it to take control of our own healthcare.

Unfortunately and unfairly, though, it can be expensive.

I know that I've told you this before, but I think that you might

benefit from having a consultation with my infectious disease

specialist. I know that he's quite a distance from you, but he just

might be able to help.

Hang in there, and don't be a stranger!

Hugs, Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: " J & M McCoy " <mlmccoy@...>

Hi everyone,

I am so sorry for not posting much the last few weeks, I have been in

such a state of depression, anger, and confusion. I feared that if I posted

in this state that I would do more harm than good for this list. Some of

you wrote me off-line, and when I responded, wrote back and implored me to

post as I am as deserving of support as anyone else. I am just too darn

full of pride, and it is kind of like praying....I pray for others, but not

myself...it is as if I do not find myself worthy or something. Anyway, I am

not fishing for any kind words, etc.. I just want to let you know my state

of mind.

Thanks to Marleen calling me and giving me a good stern talking to, I am

seeking IV treatment as I see myself failing more as each day passes. She

has convinced me to put myself first for a change, and I am trying. I saw

my Lyme doctor this past Saturday, my husband went with me and asked the

doctor if we could go self-pay since Insurance will obviously decline IV

therapy....the doctor said let's wait to see if we can get some " objective

evidence " that will prove to

Aetna USHC that I do need this treatment. I had an EMG the week before at

my neurologists, and it showed increased nerve damage, but like most neuros

and Inf. disease doctors, this guy just does not want to get involved with

Lyme disease. My doctor is getting referrals together for me to have Brain

and cervical MRI's, and soon I will go for another neuro psyche test. I am

99% positive these tests will prove that I am much worse than last year when

those tests were last done. The doctor also had me stop my abx, as he hopes

I will sero-convert....I tried this a few months ago, it didn't work, but I

am willing to try again. I really have such little faith in SKB labs, I am

considering asking the doctor to send my lab work elsewhere and possibly

this will help. I know I will have to pay for it myself.

I am so sorry I have been such a lousy list moderator, I really

appreciate Robynn more than she will ever know, she has really pitched in

and done a terrific job. I think many of you will identify with my state of

mind, lots of you take breaks from the list for awhile and lurk, that is

what I have been doing, I really haven't missed a post, and I have responded

off the list to some of you. It just seems so hopeless, I feel like I have

no right responding with encouragement to your posts, as I cannot even

control my own treatment and disease. I probably should ask my doctor to

increase my Paxil, I am in a deep depression and at least I recognize it.

So please dear friends, bear with me for a bit, sometimes reading your posts

and seeing how bad some of you are doing, can be more depressing, yet there

are also success stories. I have not abandoned you, just taking a bit of a

break trying to get well,

Love to you all,

Marta NJ

Tick found in scalp, August 1996. I live in South Jersey

and my tick bite was from here. Tested positive for HME

& Lyme disease in Feb 1997. Have had 6 weeks of IV,

on oral meds for over 3 years now. Suffering from Peripheral

Neuropathy, Herniated cervical discs.

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

Thanks ,'

You are so right of course, but when one is going through a bad spell

like this, you just cannot see it. The whole situation of Lyme disease

seems so hopeless at times and it becomes a wee bit overwhelming. I feel

more connected now, and hopefully my doctor will really come through for me

this time. All this doing nothing, but getting worse, gets really

depressing.

Hugs and thanks,

Marta NJ

>From: beth Feldman <elsbeth@...>

>

>Oh, Marta, I'm so sorry you've been feeling so bad. I really do hope you'll

>let us in on it next time. With depression, it's such a vicious cycle

>because when you feel so bad you imagine that nobody wants to hear about

it,

>then you get isolated, then you feel worse.

>

> A couple of weeks ago I fell into a REALLY BAD pit for a few days. Most of

>me wanted to crawl deeper under the covers but some little voice in the

back

>of my head said (because I've been there so many times) " Make a few calls,

>reach out. " It really helped. Upping my antidepressant dose and getting

>through my period helped as well.

>

>Also, BTW, I am guessing that some of my darker depressions have been Lyme

>symptoms and/or herx. I don't know if that's true for you.

>

>At any rate, we all know what the reality of this illness is. Some of us

>have it worse than others, most of us have times when we feel like were

>sliding back, most of us have times when we feel like we're making headway.

>I don't think it's your responsibility as list moderator to be a

cheerleader

>for us. We can all take on that role when we can and we can't others of us

>will. I really pray you get the treatment you need and that insurance

>covers.

>

>Don't give up!

>

>One of your fans,

>

>beth

>

> infected w/ Bb in 1984 in California

>Undiagnosed bullseye rash

>Low grade symptoms through 98

>Late neuro symptoms 1/99

>Diagnosed 8/99

>No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

>or equivocal indicative of OLD infection

>Abx's: 6 wks oral doxy, 4 wks IV Rocephin, Rocephin oingoing

>Live in San Francisco

[Guest guest]

Hi Reid,

I missed you too, I have been following the list, just hesitant to post

when feeling so mean....I know all of us go through this one time or

another.

Love you too,

Hugs,

Marta NJ

>From: RMcmur3194@...

>

>marta misse du....oove ya babe ...Reid

[Guest guest]

Thanks Deb,

Did not want to make anyone cry, last thing I wanted, I did/do feel

guilty when I am away from the list, I love you all so much, you have been

my salvation and helped me deal with this roller coaster ride. I feel more

connected now that I am working toward getting something done....

Hugs,

Marta

>From: DJinMECH@...

>

> >>

>Dear Marta, as I read your post, I have tears streaming down my face. I

>agree with Marleen in that you should put yourself first! We are all on

this

>list for support of one another, and that means you too! I never once

>thought that you have 'abandoned the list',, instead I knew that you were

not

>feeling well. I will pray for you because YES you do deserve it!

>HUGS AND KISSES

[Guest guest]

Marta,

I had the Pelvic ultrasound, transvaginal type, and I got myself all worked

up for nothing. If that's what you are referring to,not the results, but the

procedure. It was nothing, no pain and not as embarrassing as I thought it

would be. Ref: mammo's we all hate, I'm sending a mammo poem to off topic,

its hilarious, so save it for when you have time to read it. Good luck house

hunting, at least that is sort of fun, tiresome I know, but exciting. Vicki

>From: " J & M McCoy " <mlmccoy@...>

>snip: ... " I need to go for a Pelvic ultrasound, transvaginal type...not

looking

forward to that one. Friday I went for my mammo....(God, I hate them), ... "

[Guest guest]

Thanks Vicki,

I hate going to any doctor and for any test, I am doctored out if you

know what I mean, I appreciate knowing the upcoming exam won't be too

embarrassing or painful.

Hugs,

Marta

>From: " Vicki Ferraro " <ferraroa@...>

>

>Marta,

>I had the Pelvic ultrasound, transvaginal type, and I got myself all worked

>up for nothing. If that's what you are referring to,not the results, but

the

>procedure. It was nothing, no pain and not as embarrassing as I thought it

>would be. Ref: mammo's we all hate, I'm sending a mammo poem to off topic,

>its hilarious, so save it for when you have time to read it. Good luck

house

>hunting, at least that is sort of fun, tiresome I know, but exciting. Vicki

>

[Guest guest]

From: " Gillian Rowe " <roweg@...>

I could do with a laugh!

Love and God Bless

Gillian

Hi Gillian - I can't think of anyone stronger than you to get through this.

My father has had 5 heart attacks and triple by-pass. My mom has had open

heart surgery with one valve replaced. So I can certainly understand. Hang

in there dear! And keep trying to take those naps.

My prayers are with you. denise in michigan

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

my pa came on like yours...it does get better with the proper meds......how

much better varies person to person....but you are the first to have the same

type as me.....i'm only 33 and everyone else seems to be older.....i know how

freaky it can be....try to stay calm and don't over do it....i know that's

easier said than done.....good luck....wish you and yours the best....hope

for a pain free day......MTNCAT in ohio

[Guest guest]

on 5/23/01 8:25 PM, Testimony2Christ@... at Testimony2Christ@...

wrote:

> i went to my primary doctor who is also an orthopedic on monday. before i

> could mention pa she suggested that i may have it and recommended a referal

> to a rhumy. I tried to prepare myself for the possiblility of having it, but

> now that i heard a doctor give the possibility i'm on an emotional roller

> coaster.

>

> kimberly

>

This is a place for you to share your feelings , even if they

prattle on for hours. From what you shared, I bet everyone here knows and

remembers exactly how you feel. It's very, very frightening at first because

you can't understand what is happening to you at such a young age...

especially the pain. I know my mind kept thinking, " my God, I've got

cancer. "

It sounds like you've had your first flare. Flares are the worst! I had my

true full-body flare in January and it was much like yours. Suddenly that

part that used to just bother you a bit is in incredible pain and the rest

of your body is on fire as well. In my case, I ran a consistent low-grade

fever, had incredible back and neck pain and my brain was a total fog. I

compare it to being a walking zombie.

The good news is that you've seen a doctor and you're on your way to seeing

a rheumy. Learn as much as you can before you go in, so you can ask all the

questions that are no doubt swirling around in your mind. It will also help

calm that fear, as you'll learn that you can indeed live with this disease.

If you are concerned about the drug interaction with your breast milk, I'd

call your primary physician and get some answers to what you should and

shouldn't do.

Most importantly, take good care of yourself and rest as much as you can

right now. Your body needs extra rest during a flare. I found I had to " come

out " to everyone as a person with arthritis during my recent flare, because

people couldn't understand what was going on. You look like a healthy, young

person on the outside and they have no idea what's happening on the inside.

Don't be afraid to ask for help, especially with your children. One of the

great lessons you learn with this disease is humility. Know that the pain

won't always be this bad and that even though arthritis is a chronic

disease, you can choose how to live with it.

And lastly, feel free to post here often to let everyone know how you are

doing. You may find some of the chat rooms that are out there helpful as

well. There are many caring and understanding people here who are pulling

for you and wish this flare to be history ASAP!

Take good care!

deano

[Guest guest]

In a message dated 25/05/01 19:38:13 GMT Daylight Time, mtncat8881@...

writes:

> .....i'm only 33 and everyone else seems to be older.....i know how

> freaky it can be

Hi Mt

We are not alone

I was 30 when first diagnosed and now still a young nipper at 37 - lol

Nigel ) (uk)

[Guest guest]

In a message dated 25/05/01 19:53:30 GMT Daylight Time, jlcraig@...

writes:

> Hang in there and keep praying for a cure!

Hi There Janet and the rest of the group,

Okay 1 or 2 have said that this is a good place to have a moan etc... so I'm

going to have a moan - lol - and open myself up to u guys.

I notice that a lot of u out there r God fearing people and that is great.

I'm a lapsed Christian. I used to be a Pastor and have had the worst 2 years

of my life and as a result left the ministry cos we ran into some leaders who

treated us like slaves and acted as if they were God. At the time I was very

disillusioned and am now picking up the pieces. But I still struggle and

wince every time I here someone talk about prayer, God's love, and protection

and healing etc... Please dont think I am getting at anyone - bcos I am not,

I am just a very disillusioned guy with a lot of unanswered questions who is

hurting inside.

But I can thank God for 1 thing and that is my joints are the best that they

have ever been since I was diagnosed 7 years ago.

I must be mad to pour out my heart like this to a bunch of strnagers I have

never met - but hey - wot r friends for?? Besides us lot on this side of the

atlantic could do with a dose of realism.

Nigel ) (uk)

[Guest guest]

,

I too got PA at the age of twenty, my knees were buckling and swelling. My

fingers were swelling. etc....

I had to take care of my baby and five years later another one. Believe

that you can do this, we just have to, and try and live as stress free as

possible. You will have your up and down times with PA, but you will make

it. I have four artificial joints and four fusions in my fingers. I am

still fighting my knees and left wrist. You learn to adapt and live with

constant pain.

I am 44 now and my babies are all grown up and married. :-)

Hang in there and keep praying for a cure! (That the Gov't will pay for!)

Hugs to you!

Janet

[Guest guest]

Kim;

It sounds like you have PA. I also sounds like you are in a 'flare', so

take it easy and do as little as possible. I too am in a flare and can

hardly walk. Get yourself a cane if that can help. It's what I am doing

now, although the walker is looking pretty good right now. Try not to get

too anxious, for that will only make it worse. If you have a jaccuzzi or

hot tub use it. Remember the flare will calm down, but the more you can

relax the better it will be. I know you have 3 little ones, but do only as

much as you have to do, rather than all you would like. I'll be praying for

you, Mitch

Rev. Mitch McVeigh

St. 's Presbyterian Church, Aurora, ON

Rev.Mitch@...

ICQ 5055914

http://www.givewater.org give free water just by clicking to those who need

it.

P.S. Don't forget to visit the Hunger Site today and every day.

Every time you do you feed a few hungry people somewhere in the world.

http://www.thehungersite.com While you are at it, don't forget to click

onto the Rainforest site, the Kids AIDS site, the Child Survivor Site,

Breast Cancer site, and the Landmines site. Help is only a click away!

http://www.Christssafetynet.com my SAFE site for kids who love Christ and

want to enjoy the internet without worrying about inappropriate banners and

adds.

http://www.geocities.com/Heartland/Shores/6710/index.html my personal

website

Have a virus? Check http://www.antivirus.cai.com ITS FREE and WORKS

[Guest guest]

In a message dated 5/25/01 3:39:56 AM Pacific Daylight Time,

Testimony2Christ@... writes:

> oh, forgot to mention my immune system is going wacko so I wonder if that

> may

> be why i'm suddenly having the pain so much worse?

>

>

-

I have never experienced so many joints affected at one time. If I may ask,

how do you know your immune system is wacko? I do know that stress normally

makes my joints act up and hurt worse. Maybe you're body is reacting to a

strain it never had to deal with before. You said it wasn't bad prior to the

doctor confirming you had PA. Maybe unconsciously that extra worry is

causing you to flare up??? Not sure though because I am definitely no

doctor. As hard as it is I think you should try to relax and not worry so

much about what it will be like tomorrow. Live for today and let tomorrow

take care of itself until it becomes today. Try a long bath with lights

dimmed and soft music---I think you owe it to yourself to relax.

Good Luck--

Chicagoland Sharon

[Guest guest]

In a message dated 5/25/01 11:40:21 AM Pacific Daylight Time,

Rev.Mitch@... writes:

> If you have a jaccuzzi or

> hot tub use it. Remember the flare will calm down, but the more you can

>

Kim-

I would like to add that all people are different and what works for one

might not work for another. I mention this because I do have a home spa. My

husband bought it just for relaxing prior to the PS kick in. When I swell up

I cannot tolerate either warmth nor cold anywhere near the swelling. Although

I have not seen anybody say they experience the same I thought I would share

with you - just in case. Relaxation though will be helpful and during a flare

I found that preventing motion of the inflamed limb helps to shorten the span

of the flare.

be better real soon

Chicagoland Sharon

[Guest guest]

on 5/25/01 8:08 AM, mtncat8881@... at mtncat8881@... wrote:

> my pa came on like yours...it does get better with the proper meds......how

> much better varies person to person....but you are the first to have the same

> type as me.....i'm only 33 and everyone else seems to be older.....i know how

> freaky it can be....try to stay calm and don't over do it....i know that's

> easier said than done.....good luck....wish you and yours the best....hope

> for a pain free day......MTNCAT in ohio

>

Hey Mtncat, you aren't the only young one! There are several people on

here in their 20s and 30s (and 40s, 50s and 60s...hee).

deano

[Guest guest]

how did you deal with it at such a young age? I've always been very active

and now I have a hard time going shopping. My legs have always been my

strong point. Now I have to rely? on my arms for my strength. I'm the

mother of four children so I stay busy that helps. Thank God I've always

been active. Thanks for the encouragement. MTNCAT in Ohio

[Guest guest]

Thanks for the encouragement. I need all I can get. My pa has gone on a

wild rampage. MTNCATin Ohio

[Guest guest]

Nigel ~

This part of your message is what caught my eye the most ... I've had a

related experience in that I stopped attending my church for a couple of

years due to how the people treated eachother. Unfortunately (or

possibly fortunately ??) God didn't make us all alike and for some

reason there are 'good' ones and 'bad' ones. And I also think at times

we each fluctuate between being a 'good' one and a 'bad' one. Anyway,

my point is, it sounds like you still have a very strong faith in God

and your lapse is more in the realm of society than Christianity. As a

former Pastor, I would think you would have seen this a lot. I

personally think praying to God is a good thing ... and having faith

that cures can happen is a good thing, too.

I hope your journey to pick up your pieces is going well ... just don't

let humans get in your way. )

Enjoy,

Judy

NippyNige@... wrote:

> I used to be a Pastor and have had the worst 2 years

> of my life and as a result left the ministry cos we ran into some

> leaders who

> treated us like slaves and acted as if they were God.

[Guest guest]

I may be 41 now, but I've had PA for about 17 years.....

Becky

Re: [ ] update

>>>i'm only 33 and everyone else seems to be older<<<

[Guest guest]

In a message dated 5/25/2001 6:40:10 AM Eastern Daylight Time,

Testimony2Christ@... writes:

<< oh, forgot to mention my immune system is going wacko so I wonder if that

may

be why i'm suddenly having the pain so much worse? >>

- you didn't say why your system was going wacko, but if you have

some sort of infection, that's just what PA loves to start up a nice flare.

You sound like you are really having it rough. Do you see a rheumatologist?

If not, my advice would be to get one and to ask him/her to treat as

aggressively as possible. I'm sure you hate to give up breastfeeding your

baby, but at this point, maybe it's time for mom to give herself a little

" babying " and try some treatments/drugs to feel better. After all, your kids

need you to be in decent condition to care for them. I'm a big advocate of

treating PA with all the big guns to try to halt it. Two years ago after a

hospitalization with an infection that almost killed me, I had a huge flare

(and wasn't yet diagnosed with PA). When I finally saw a rheumy and was

diagnosed, I pushed to be treated aggressively. I feel like because of

Vioxx, Prednisone (which I'm now off) and MTX I have gone from almost needing

a wheelchair to the point where my life is comfortable. (ok, tolerable).

But I'm able to keep up with the housework and work 40+ hours a week. After

the hospital I couldn't walk to the house from the curb without crying.

I hope you find some relief soon - you sound like you need it!

Take care,

[Guest guest]

In a message dated 5/26/2001 4:50:14 AM Eastern Daylight Time,

NippyNige@... writes:

<< ran into some leaders who

treated us like slaves and acted as if they were God. At the time I was very

disillusioned and am now picking up the pieces. But I still struggle and

wince every time I here someone talk about prayer, God's love, and

protection

and healing etc... Please dont think I am getting at anyone - bcos I am not,

I am just a very disillusioned guy with a lot of unanswered questions who is

hurting inside. >>

Hi Nigel - As a " fallen away " Catholic I can certainly relate. I hurt too

when I think of how a few bad Church leaders have let their power corrupt

them and led me to question so many things about religion. But I have to

hope that they were the exception and not the rule. I feel that everyone's

religion with God is very personal and don't push my opinions on anyone.

However, I also believe in the power of prayer and am grateful to those

people who pray for me and all of the other PA sufferers.

I also have to believe that there is a reason WHY we all seem to have been

give so much to deal with healthwise. Maybe it is to open our eyes to what

is really important in life? I know that dealing with the fact that I have PA

and may have to ask for help with everyday tasks or may have to slow myself

down at time has been a very humbling experience. I'm grateful now for so

many things I took for granted - getting out of bed in the morning, being

able to go to work, a loving and supportive spouse, and so many other things

I never stopped to even think about how lucky I was in having them. It's kind

of funny, but having PA has strengthened my belief in God more than any

Church leader ever could.

For what it's worth -