Remission

[Guest guest]

Hi Lovette,

I don't think you read my post wrong. The brain fog and other neuro

problems are just there. They have been for 10 yrs. and probably always

will be. I have become accustomed to them and you're right ... this is

exactly what my life is going to be like. Don't much care for the neuro

stuff, but hey ... it's better than the alternative.

I consider myself in remission because for the past several years I haven't

been sleeping 15 - 18 hours a day. I don't have the daily, horrendous

headaches. Haven't had meningitis in a long time!!! The arthritis is under

control. I am back to walking an hour a day on the treadmill at 3.6 mph. I

can play 18 holes of golf w/o getting tired. I work part-time, 8:00 - 12:00

Mon. - Fri., I have three web sites that I play with, and a grandson who

takes a LOT of energy. LOL!

So for me, it's great!! That's why I consider myself to be in remission.

And I'm just stubborn enough to NOT let Lyme get me. That's one reason why

I chose to go off meds ... I knew I could beat it. I have a very positive

attitude and I just refused to give in to it. But for the first three yrs.

I did nothing ... couldn't do anything. Was VERY sick even with all the

abx. But then I decided I WOULD get well. :-)

Yes, I still get words all tangled up and sometimes I have to describe

everything by using other words ... much like playing charades. And I have

a tendency to totally lose my train of thought mid-sentence. But like I

said, it's been like that for 10 yrs. and I'm not holding out much hope for

any improvement in that area. The damage has been done and I don't know

that it can be undone.

I REALLY hope you can get to the point where I am ... as well as everyone

else struggling daily with this rotten disease. I was VERY lucky in that

when I went off all meds. it wasn't that bad. I managed to get thru it and

come out the other side in pretty good shape ... considering. Many (if not

most) Lyme patients can't do that.

And even tho' I consider myself to be in remission, and I do have a pretty

active life, I always read everything I can get my hands on about Lyme, I

write letters, I make phone calls, even had two articles on Lyme published

in local newspapers. But I don't post a whole lot and don't get too vocal

about things. But I'm here ... working for the cause!! :-) Many people

who go into remission leave the list and go out and enjoy their lives.

Well, I do too. But I won't leave the list. I'd be lost without it!!

*Grin*

Be well!!! :-)

Jean

> - how in the world can you call yourself in remission with

> brain-fogging and neuro symptoms? That's lyme - that's why I can't read

> for long, that's why I get my words mixed up, or just halt when I speak

> - I'm not in remission! I haven't even begun to figure out what

> remission is! Perhaps you've come to an understanding that I have not -

> that this is what like is like and what it will be like. I'm coming up

> on my 2 year anniversary of this disease, was treated promptly, and I'm

> not getting better. Maybe you can shed light on your situation for me

> if I've misread what you said.

>

> Lovette

[Guest guest]

Lovette--

I'm with you....if you are still brain fogging and neuro symptoms....you still

have

LYME...you are not in remission....I have been on IV's for 2 years and it has

taken that long

to help clear my thinking, not back to normal yet...but much better than

before...can

accomplish more...maybe that is what was trying to say---she is

accomplishing more and

feels it is the best it is going to get... don't know...but I would not use the

word

remission unless I had ALL my faculties back...

Rhonna

Arconic wrote:

> Dear Connie and Jean: Connie - don't wait around worrying about

> whether you'll relapse. Enjoy your health when you have it, and live

> life to the fullest for all of us!

>

> - how in the world can you call yourself in remission with

> brain-fogging and neuro symptoms? That's lyme - that's why I can't read

> for long, that's why I get my words mixed up, or just halt when I speak

> - I'm not in remission! I haven't even begun to figure out what

> remission is! Perhaps you've come to an understanding that I have not -

> that this is what like is like and what it will be like. I'm coming up

> on my 2 year anniversary of this disease, was treated promptly, and I'm

> not getting better. Maybe you can shed light on your situation for me

> if I've misread what you said.

>

> Lovette

>

> Many thanks to our founder and friend, Marta McCoy, for making what

it is today.

>

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[Guest guest]

It's encouraging to hear of someone who feels well....Thanks for sending the

hope

OR

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Dear Connie,

YIPPEE! Congrats!!!

Have you asked doc or looked into supplements, etc. which can help to boost

your immune system naturally?

Blessings,

Chris

[Guest guest]

Connie, your good news gives us all hope! Fingers crossed and prayers on the

way. Good luck. --charlotte

[Guest guest]

rheumatic remission

>

>

> > Doris,

> > I am not in remission yet, but I do think I am very close. For me "

close

> > to " remission is....

> >

> > ***not being afraid of going to bed due to not turning into a block of

> > cement at night

> > anymore. I used to be terrified to go to sleep as I would literally have

> to

> > scream out when I tried to bend my frozen joints as it was so painful.

> >

> > ***Sleeping SOUNDLY!

> >

> > ***Not being afraid to get out of bed in the morning as my feet no

longer

> > feel as if they have stones sewed into them and all of my joints move

with

> > ease except a few triggering finger joints.

> >

> > ***Having the trigger fingers back to normal within an hour of getting

up

> >

> > ***Not spending time thinking about the disease as now I rarely even

think

> > of having it

> > unless the seven hours of standing on cement floors at work gets the

best

> > of me

> >

> > ***No longer being obsessed and spending hours on the internet looking

for

> > " cures " as I am at a very even state with the disease

> >

> > ***I am getting sore muscles and not joints from working out with

weights

> >

> > ***My temperment is much better!

> >

> > *** I think clearly and positively

> >

> > *** getting out of a car using one leg and then the other and not

swinging

> > to the side to get out

> >

> > *** Grabbing, twisting, pulling, pushing objects without pain and

without

> > thinking about it

> >

> > *** No more aching!

> >

> > ***Not fearing the " low " comodes!

> >

> > ***Just overall...feeling good!

> >

> > Plus, I have completely been of prednisone for six months and have cut

my

> > plaquenil in half. I will be having blood tests in Novemember that will

> > better tell the story ( I hope!)

> >

> > Doris, hang in there. I was in terrible shape for almost two years on

the

> > antibioitics.

> > then things starting getting better, and better , and better!

> >

> > I have been to several doctors lately and they could not believe that I

> had

> > RA. They were floored and told me that they would have never imagined

it.

> I

> > have had three doctors take down Dr. Franco's name as they were so

> > impressed with how well I am doing. I went to look at a house the other

> > day, and the realator was so impressed at the ease I could get up and

down

> > the steps that she gave my name to a friend of hers to call me about the

> AP

> > treatment. Just 8 months ago, I had to use a ramp to get in and out of

my

> > house as I couldn't use steps.

> >

> >

> >

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> >

> >

> >

>

[Guest guest]

Sonny,

You do realize you're just what we've been waiting for -- a doctor on

the AP! Just remember, when you start feeling better, we'll all be

expecting you to go to lots of medical conventions and spread the word.

:}

Hugs,

a Peden

tneoh wrote:

>

> Re: rheumatic remission

>

> > Dear , I am so impressed. I have just started AP for my sero

> negative

> > arthritis and I am a doctor. Your post gives me so much hope

> >

> > Sonny

[Guest guest]

Welcome Dr Sonny! I was also treated with high dose IV antibiotics (more on

the Lyme profile) and got tremendous recovery. Until my emotionally stressful

divorce. There are lots of good news stories here.Can I ask where are you

from? Feel free to email privately.

in MI

<< > > Dear , I am so impressed. I have just started AP for my sero

> negative

> > arthritis and I am a doctor. Your post gives me so much hope

> >

> > Sonny >>

[Guest guest]

Dear ,

I am practising in Malaysia.I was trained and practised for a while in

Australia.While it is good that as a doctor you have access to more

resources and can continue working while having this problem, it is

possibly more stressful bec you know more about the potential harmful

effects of the disease and medications.

But I am not complaining it could be a lot worse.I am confident it is not

in God's plan for me to be limping around for the rest of my days.

regards,

sonny

--- Original Message -----

From: <Sjlane99@...>

<paula.peden@...>; <tneoh@...>

Cc: <rheumaticegroups>; <LCarroll@...>

Sent: Tuesday, October 10, 2000 11:21 AM

Subject: Re: Fw: rheumatic remission

> Welcome Dr Sonny! I was also treated with high dose IV antibiotics (more

on

> the Lyme profile) and got tremendous recovery. Until my emotionally

stressful

> divorce. There are lots of good news stories here.Can I ask where are you

> from? Feel free to email privately.

> in MI

>

> << > > Dear , I am so impressed. I have just started AP for my sero

> > negative

> > > arthritis and I am a doctor. Your post gives me so much hope

> > >

> > > Sonny >>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

on 10/9/00 11:18 PM, tneoh at tneoh@... wrote:

> Dear ,

> I am practising in Malaysia.I was trained and practised for a while in

> Australia.While it is good that as a doctor you have access to more

> resources and can continue working while having this problem, it is

> possibly more stressful bec you know more about the potential harmful

> effects of the disease and medications.

>

> But I am not complaining it could be a lot worse.I am confident it is not

> in God's plan for me to be limping around for the rest of my days.

> regards,

> sonny

Sonny,

We are really happy to have you on the list. The AP seems to be particularly

helpful for sero-negative arthritis. We hope it helps you!

Jean

[Guest guest]

Hi ,

I also stay in Michigan (Southfield) .Can you tell me the doctor you went

and who prescribed you the antibiotics .

My doctor (rheumy) has given me antibiotics for only 30 days and that too

after making a lot of noises ,

Thanks,

Suranjan

Re: Fw: rheumatic remission

Welcome Dr Sonny! I was also treated with high dose IV antibiotics (more on

the Lyme profile) and got tremendous recovery. Until my emotionally

stressful

divorce. There are lots of good news stories here.Can I ask where are you

from? Feel free to email privately.

in MI

<< > > Dear , I am so impressed. I have just started AP for my sero

> negative

> > arthritis and I am a doctor. Your post gives me so much hope

> >

> > Sonny >>

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

> Jude

>

> Do you have any clue as to how your disease went into remission. Did

> you

> change your diet or exactly how did it go into remission? Thanks so

> much

> and sorry to hear about your dad....

[Guest guest]

snipped fr. message:

> glad you have been in remission for almost three years.

Hi,

I am confused by the term remission. Do Lymies not get better? Do the

bacteria stay in us? Sorry if this is " old hat " to people - my LLMD has

never specifically said anything about this, except that I would feel

better and better (which is true). There are many symptoms which

I have never had, such as tingling, numbness, arthritis.

(By the way, I got off the 2nd abx, the doxy, and I feel better now. I

will try to go on it again after I get my thesis proposal in. Thank you

to everyone who wrote me).

Healing, and best wishes, to all, Marie

[Guest guest]

Hi Marie,

I say remission, because I have heard of so many that felt they were cured

for years only to have the bacteria break out of hiding, two, three, five,

and even 10 years later...........unfortunately, I think we have to say

remission............there are too many lyme " cured " patients out there that

have become reactivated years later............is it from a hiding critter?

or a new undetected tick bite........I don't think we know enough....to say

cured.............Connie in Remission nwnj.

Leave no stone unturned.......

[Guest guest]

marie...while the point is contested by the academics...most of us here feel

that we are never cured....personally in 11 years i have had periods of

remission for up to 18 months at a time...but never longer......and my own

experiance is each time i come out of remissionn that my symptoms are

stronger....i had a 3 week remission in 96 and when it hit again i became

tottaly disabled....it may not be the same for all but that is what has

happened to me....

Reid

[Guest guest]

Reid and Marie

I felt impelled to write, because " knock on (my head) wood, it has been

12 months for me that I have been in remission. I am keeping my fingers

crossed and hope it stays away. (From the physical aspect caused by Lyme

disease)

I am on Aricept (prescription) for my short term memory loss which has

improved dramaticly where I am now attending a 16 wk / one day per week

Supervisory class that my job has made available to me to attend, hopefully

for future promotional opportunities.

I cannot fathom getting all the physical symtoms all over again. I hope

after another 12 months on November, 2001, I can send another email to

everyone that I am working on my 2 yr remission from Lyme disease..........

Alan

NJ

Farmhaven2@...

[Guest guest]

Congratulations on your one year Remission.......I pray it stretches into

many years. I also hope my few months of remission also extend into

years...........and let there be a cure soon for

everyone!!!!.............Glad to hear the good news................Connie in

remission, nwnj

Leave no stone unturned.......

[Guest guest]

alan...i also hope in a year that u can send that email......someday maybe we

all will enjoy ong remissions or even a cure....my llmd wife hasa lyme....and

she is going thru a bad period now.....i was just in to see him....he feels

at the current point we must all cope day to day ...enjoy the good ones and

battle thru the bad.......hell of a way to live but these our are

choices......i wish i could give people more hope but i tell it as i have

lived it for over a decade......i pray for a cure ...for all of us....

Reid

[Guest guest]

--- minina62@... wrote:

> I have read some people's stories here that mention

> " remission. " My

> fiance, who is the one who suffers PA, does not know

> what that is,

> since he never experienced it. He has had PA for

> almost 23 years.

> He developed it when he turned 13, right at the

> onset of puberty.

> Has any of you lived through the same experience, no

> having had any

> episode of remission ever? If so, would you mind

> sharing your

> experience and how you have coped along the years?

>

>

> Hello: I have had PA for about 5 years and am 45

years old. I went from a very healthy tomboy to a

person just nearly unable to walk and function on a

job in a matter of weeks. since that time i have had

a couple of times of near pair free periods. at this

time i can say that every movement hurts but I keep

going. Sorry that your friend is also suffering.

__________________________________________________

[Guest guest]

i am going on ten years i am now 28 years old and have never had a

remission. it just keeps getting worse the drugs seem to do little but i

haven't experienced any of the side effects people complain about. i just

started sulfasalazine i will keep you posted. mornings are definitely the

worst which sucks because i used to love to sleep in. now my back wakes me

up and i rarely get back to sleep. i find hot baths and heat pads helpful.

kevin

>From: minina62@...

>Reply-

>

>Subject: [ ] Remission

>Date: Thu, 01 Mar 2001 12:45:26 -0000

>

>I have read some people's stories here that mention " remission. " My

>fiance, who is the one who suffers PA, does not know what that is,

>since he never experienced it. He has had PA for almost 23 years.

>He developed it when he turned 13, right at the onset of puberty.

>Has any of you lived through the same experience, no having had any

>episode of remission ever? If so, would you mind sharing your

>experience and how you have coped along the years?

>

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Our doc claims that my hubby can go into remission if properly treated...he hasn't as of yet (that i know of) he is nowhere as bad as he was a year ago, tho, and since mtx is used to treat forms of cancer, i think the word remission is generalized - we were told that it is possible to go into remission and not have to take any more meds....(i thought i was the only one who had heard of the remission thing since so many here seem so have been suffering for so long)

minina62@... wrote:

I have read some people's stories here that mention "remission." My fiance, who is the one who suffers PA, does not know what that is, since he never experienced it. He has had PA for almost 23 years. He developed it when he turned 13, right at the onset of puberty. Has any of you lived through the same experience, no having had any episode of remission ever? If so, would you mind sharing your experience and how you have coped along the years?

[Guest guest]

Carol,

I went into remission on MTX--was actually walking like normal and had no

problems at all. I gradually tapered off and was on nothing at all. That

worked really well for me for about 6 months and by then I was in the midst

of planning a wedding. Welcome back aches and pains (although not remotely

as bad as they were before). The crux is...it can happen. IF it does

happen, try to be REALLY careful to avoid extra stresses, etc. and be really

thankful and enjoy life!

Sinead

>

>

>Our doc claims that my hubby can go into remission if properly

>treated...he hasn't as of yet (that i know of) he is nowhere as bad as he

>was a year ago, tho, and since mtx is used to treat forms of cancer, i

>think the word remission is generalized - we were told that it is possible

>to go into remission and not have to take any more meds....(i thought i was

>the only one who had heard of the remission thing since so many here seem

>so have been suffering for so long)

_________________________________________________________________

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[Guest guest]

> , I have been prednisone-free for over a year, with normal

labs at each testing. I do take 50mg of Imuran, as well as 750mg of

Urso 250 for my AIC. I consider that I am in medically-induced

remission from AIH, because my hepatitis is chronic, with second

biopsy showing that inflammation continues. However, I feel pretty

good and haven't had a noticable " relapse " in terms of abnormal labs

or symptoms other than continual fatigue, joint pain and pruritis;

those remain, no matter what, but are mild and not debilitating.

Because my response to the meds has been so good, I do not expect to

need a transplant. So no matter whether I call it remission or not,

I

consider myself blessed.

>

> Sorry to blather on so!

> Kay in Austin

Hi Kay

To begin with, my major affliction is computer illiteracy, not AIH so

I hope this gets through to you. I am interested in your case

because

it is very similar to the treatment my doctor has in store for me.

She is recommending that I go off prednisone(currently 5mg) and

imuran(currently 50mg) and just stay on urso deoxy(currently 1000mg

but up to 2000 mg when I go off the other medications). You say that

your labs are good but that your biopsy shows you still have

hepatitis. This is not the first time I have heard this on this web

site. I always thought if your labs were okay, your liver was okay.

Do you know the reason for this?

in Toronto

[Guest guest]

In a message dated 6/19/01 5:32:11 PM Central Daylight Time, mhorten@... writes:

Subj: remission

Date: 6/19/01 5:32:11 PM Central Daylight Time

From: mhorten@... (Horten, Mona)

Reply-to: hyperthyroidism

hyperthyroidism ('hyperthyroidism ')

Retta,

I kept myself on meds even though prior doctors wanted to take me off.

Changed docs, this one believes in very slow reduction of meds so as not to

shock the system. He and I both made the decision to reduce slowly and

finally stop meds in January. Levels have pretty much stayed the same since

last Fall (with and without meds). I think several factors are involved but

reducing dosage slowly was a big factor. I was taking 1/4 pill/once day for

several months before stopping completely. Wish I had more to offer, guess

my body decided it was time to recover. I'm praying for continued

remission!! BUT NEVER, EVER RAI!!!! Take care, Mona

Mona, are you on Tapazole or PTU? thanks Kim

[Guest guest]

Hi Kim,

I was on PTU. Five years ago I was placed on TAP but had a nasty allergic

reaction. No problems with PTU. I've been off meds since January. Mona

Re: remission

In a message dated 6/19/01 5:32:11 PM Central Daylight Time,

mhorten@... writes:

Subj: remission

Date: 6/19/01 5:32:11 PM Central Daylight Time

From: mhorten@... (Horten, Mona)

Reply-to: hyperthyroidism

hyperthyroidism ('hyperthyroidism ')

Retta,

I kept myself on meds even though prior doctors wanted to take me off.

Changed docs, this one believes in very slow reduction of meds so as not to

shock the system. He and I both made the decision to reduce slowly and

finally stop meds in January. Levels have pretty much stayed the same since

last Fall (with and without meds). I think several factors are involved but

reducing dosage slowly was a big factor. I was taking 1/4 pill/once day for

several months before stopping completely. Wish I had more to offer, guess

my body decided it was time to recover. I'm praying for continued

remission!! BUT NEVER, EVER RAI!!!! Take care, Mona

Mona, are you on Tapazole or PTU? thanks Kim