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--- LymeDizzez@... wrote:

> From: LymeDizzez@...

>

> Hi. My name is and I live in New Bedford,

> Massachusetts. I have been

> tentatively diagnosed with Lyme Disease (process of

> elimination right now).

> We aren't sure because my neurologist says that I

> may have a Dormant strain

> that will not show up positive until six weeks after

> the first symptoms show.

> I'm in my third week of hell and I have been left

> looking and feeling as if

> I'd just had a stroke. No one out here is sure what

> to do with me. Lyme

> disease is not prominent here. I've been struggling

> with emergency rooms,

> pain killers, hospital stays, antibiotics,

> prednisone and blatant disbelief

> in my pain and agony.

> Sorry. I didn't mean to ramble but it's such a

> relief to find all of you.

>

>

> ICQ #26791014

-

Welcome to our list. Sounds like you are getting the typical runaround

that all of us Lymies get when trying to get a diagnosis and treatment.

We are also told here in MI that Lyme does not exisit here. But I have

not been out of the state for 2 years and have Lyme. Had the rash last

July and got progressivly worse since then. Also if you see how many on

this post are from MI you will see that it does exisit here and I m

sure it exists wherever there are hosts for the ticks. The biggest

thing is to get yourself in to a good Lyme Literate doc and dont let

anyone else tell you that Lyme is not a real threat. This group is

wonderful and we are all here for each other. I have had a real

lifeline in this group and am so grateful to have this kind of support

and understanding.

Feel free to ask questions and vent if you need to.

L>

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--- LymeDizzez@... wrote:

> From: LymeDizzez@...

>

> In a message dated 6/8/99 10:17:54 AM Eastern

> Daylight Time, lclott@...

> writes:

>

> << Welcome to our list. Sounds like you are getting

> the typical runaround

> that all of us Lymies >>

>

> LOL, I love the name, Lymies. I've started a

> separated buddy list and I

> called it Lymies. I've already taken steps to find

> some kind of specialist

> here. I'm waiting.

>

> , New Bedford, MA

> <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme

> Disease and Me</A>

> ICQ # 26791014

>

> -

I had ICQ for awhile and now cant get it back up and running. Any

ideas? I loved it but cant get it going.

L

P.S.

If you could e mail me privately with any ideas that would be

great!------------------------------------------------------------------------

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> week?

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,

If you are on prednisone (a steroid) you need to

get off it now. Steroids work by surpressing the

immune system. They will make your symptoms WORSE,

not better. Please make every effort to contact a

Lyme-literate physician immediately. My mother

died because she was diagnosed with MS and given

steroids instead of antibiotics for Lyme, which

she really had. Don't mean to scare you.... well,

maybe I do mean to scare you.

I'm attaching a document in MS Word that you might

find useful -- it's the standard treatment

protocol for Lyme. If you can't detach it or print

it out, I can fax it or snail mail it to you.

Jean

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In a message dated 6/8/99 2:31:41 PM Eastern Daylight Time,

Namkrats3@... writes:

<< I'm curious to

know what you are taking and how your Lyme blood tests came out. >>

So far, all tests for Lyme Disease have come back negative and I am told this

is due to two reasons: the first is because it might not show up while I am

on the antibiotic (rocephin) and second because the neurologist feels that I

may have a dormant strain that doesn't show positive until six weeks after

the first symptoms.

, New Bedford, MA

<A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

ICQ # 26791014

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Hi ,

Welcome! Your symptoms are almost identical to mine. They have ruled out

everything else but Lyme Disease in my case. You seem to be on the right

track since you have found a Dr. to put you on IV abx. I'm curious to

know what you are taking and how your Lyme blood tests came out.

Good Luck, Joan

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In a message dated 6/9/99 3:39:20 AM Eastern Daylight Time,

jscully@... writes:

<< Don't mean to scare you.... well,

maybe I do mean to scare you. >>

OK, LOL, you've scared me. But I was on strong steroids in the hospital and

the home dosage was such a drastic change that I spent Sunday morning in the

emergency room in excruciating pain due to the dosage difference. I won't

just drop off this. It hurts way too much. I'm being tapered off of it and I

think I'll stick to that for a bit. I was given steroid originally because

they thought it was Multiple Sclerosis. Now I am in the process of being

weaned off it.

Thanks

, New Bedford, MA

<A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

ICQ # 26791014

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Thanks for posting this I was confused if is still on

prednisone or not, I thought maybe she meant to write she wasn't on it

now....I hope she takes the Burrascano protocol to her doctor.

Hugs,

Marta

>,

>If you are on prednisone (a steroid) you need to

>get off it now. Steroids work by surpressing the

>immune system. They will make your symptoms WORSE,

>not better. Please make every effort to contact a

>Lyme-literate physician immediately. My mother

>died because she was diagnosed with MS and given

>steroids instead of antibiotics for Lyme, which

>she really had. Don't mean to scare you.... well,

>maybe I do mean to scare you.

>I'm attaching a document in MS Word that you might

>find useful -- it's the standard treatment

>protocol for Lyme. If you can't detach it or print

>it out, I can fax it or snail mail it to you.

>

>Jean

>

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In a message dated 6/10/99 12:44:32 AM Eastern Daylight Time,

byrd@... writes:

<< You do not have ticks inside your body you have small bacteria lurking

around in there. >>

Whew! This is all so nerve wracking enough, LOL. I have found a doctor who is

more knowleageale (I am told) regarding Lyme Disease than any other physician

in Mass. I found a Lyme Support group in Fall River and that's where I got

the name from. He's on the Cape which is only an hour from me. I've already

called my regular doc and made him schedule me an appointment. I am learning

everyday that I am NOT the only one in my area. It seems it is simply not

discussed because there are no definitive answers. I'll be honest, I'd heard

of Lyme Disease, but I had no idea of the damage it caused nor the pain and

suffering it brings. I am guilty of not being aware until it's too late.

, New Bedford, MA.

<A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

ICQ # 26791014

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,

Lyme Disease is VERY prominet in that area, I know 6 people from the

surrounding area of Fall River, Newport and Narragansett area.

See: Dr. Reardon

East Greenich, RI (Old Post Rd)

(401) 884-2229

Smiles

& Russ

PS, You do not have ticks inside your body you have small bacteria lurking

around in there.

----------

> From: LymeDizzez@...

> lyme-aidonelist

> Subject: [Lyme-aid] Hello

> Date: Tuesday, June 08, 1999 3:08 AM

>

> From: LymeDizzez@...

>

> Hi. My name is and I live in New Bedford, Massachusetts. I have

been

> tentatively diagnosed with Lyme Disease (process of elimination right

now).

> We aren't sure because my neurologist says that I may have a Dormant

strain

> that will not show up positive until six weeks after the first symptoms

show.

> I'm in my third week of hell and I have been left looking and feeling as

if

> I'd just had a stroke. No one out here is sure what to do with me. Lyme

> disease is not prominent here. I've been struggling with emergency rooms,

> pain killers, hospital stays, antibiotics, prednisone and blatant

disbelief

> in my pain and agony.

> Sorry. I didn't mean to ramble but it's such a relief to find all of you.

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--- LymeDizzez@... wrote:

> From: LymeDizzez@...

>

> In a message dated 6/10/99 12:44:32 AM Eastern

> Daylight Time,

> byrd@... writes:

>

> << You do not have ticks inside your body you have

> small bacteria lurking

> around in there. >>

>

> Whew! This is all so nerve wracking enough, LOL. I

> have found a doctor who is

> more knowleageale (I am told) regarding Lyme Disease

> than any other physician

> in Mass. I found a Lyme Support group in Fall River

> and that's where I got

> the name from. He's on the Cape which is only an

> hour from me. I've already

> called my regular doc and made him schedule me an

> appointment. I am learning

> everyday that I am NOT the only one in my area. It

> seems it is simply not

> discussed because there are no definitive answers.

> I'll be honest, I'd heard

> of Lyme Disease, but I had no idea of the damage it

> caused nor the pain and

> suffering it brings. I am guilty of not being aware

> until it's too late.

>

> , New Bedford, MA.

> <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme

> Disease and Me</A>

> ICQ # 26791014

>

> -

Glad you found a good LLD to see. Like you I knew a little about Lyme

but had noo idea the severity of it or that it is as widespread as it

is. Part of this is because unlike AIDS and other nasty diseases you

very rarley hear it being talked about on the news or in the paper. And

if you do it is called an easily curable problem and made to sound like

there is no threat whatso ever to anyone. Also the docs downplay it so

much because they dont want to admit its so common or just dont know

themselves. Up until I found this wonderful list and started to do alot

of reseach myself I believed what I was told by all of these docs. Now

I have learned a valuable lesson and no longer just take what the doc

says as gospel. Since I used to work with docs I knew about the ego

thing but never dreamed that there were docs out there that just

refused to believe something or turned away from it because of the Ins

fallout. Like you I learned all of this too late.

L

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--- Milsun@... wrote:

> From: Milsun@...

>

> Hi everyone!

> I'm new to the group even though

> i've had lyme for over 5

> years...Misdiagnosed by a number of Doctors!!I've

> had many ups and downs..if

> anyone wants to chat please Email me at

> Milsun@...!Talk to you later!

>

> Welcome to the group. I hope you will continue to post and share your

valuable experiences. We are a great group and always welcome new ideas

and its a great place if you just need to vent.

L

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Welcome to the Group.....I too have had Lyme misdx for a few years. It

will be four years at the end of the summer..........Its hard to believe

I've lost that much time of my life......

......But I am a survivor and stay an active participant in my health care

and up to date as much as possible on current info out there. I just don't

throw myself into the hands of the Drs.....especially not with this

disease.........There is a lot to learn here......glad you have joined

us......Connie in NWNJ

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  • 2 weeks later...
Guest guest

Dear ,

I will pray for you and yours. Why did your Doctor switch you from something

that was helping you. I don't understand. You'd think that if they yeast was

being taken care of and then you stoped what was helping you would get it back

worse. Prayers for peace in your life, that your children get better and you

find something to correct the mold and musty basement. They do have things that

you can put into paint that are not expensive. I would ask if there was a spray

or something to correct that problem or I would check my liabrary. Cheerfully

Myra

Hello

Hi Everyone,

My name is , and I was diagnosed with Candida in May, (finally). The

doctor put me on Nizoral, and I did really well on it. After 2 weeks, he

switched me to Nystatin, and I had a lot of problems with it and had to quit

taking it. Now I am struggling to overcome my symptoms again. My main symptoms

were the sugar craving and extreme fatigue.

I am a single mom with 4 kids at home. One of them is handicapped. Life

is a little hectic right now. I just moved to a house with a dusty, moldy

basement, so that's not going to help my health any.

I'll keep this short for now. I'm looking forward to meeting all of you.

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  • 2 weeks later...
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Hi,

Glad to hear that brooke was able to start decreasing her prednisone. I hope it

works well and doesn't cause any flare up for her. My son got the go-ahead on

Thursday and has been reduced by 5mgs, down to 25mgs

a day, starting this past Friday. We'll probably stay at this dose for at least

a month before trying to go down again. It's always been a difficult process for

us and if all goes well, I'd really like for this

to be successful this time around. I don't want to get too overly optimistic but

I am always hopeful. It doesn't start getting to hard till we get down around

15mgs, anyway. So, we've still got some leeway.

He was starting to get really Cushingoid. Still is. Weighs 65 pounds and is

still 3 feet 11 inches. For the past 3 years!!!! Has been eating like crazy! Has

very round 'moon face' and a little pot belly, extra

body and some facial hair. Having some difficulty fitting into his favorite

shorts. Is very particular about the newest styles and fashions and hasn't like

a few of the newer shorts I've bought :-( He

definitely needs to be with me these days, if we're purchasing clothing. He

sorts of looks like a cuddly little Teddy Bear. He can't wait to slim down a bit

again. I love him either way but i know it's affecting

his self image a bit because people do comment sometimes. And they just love to

pinch his cheeks. He's managing, though. And still feeling pretty good.

, if you give us an update on how manages with each successive

drop in the prednisone, I'll do the same for Josh. Maybe one of these days

they'll be joining the company of the kids represented on

the list who no longer need to take prednisone!!!!

Who is currently on that list, by the way? Which kids here don't take

prednisone? Hey, maybe that's a good question to ask through the new onelist

service? Maybe I'll give it a try.

Well, anyway, hope you guys are well :-)

Take Care,

Georgina

shancna@... wrote:

> Hello my daughter went to Boston today ,and they agreed to start to

decrees her pediepred 1mgevery two weeks I hope this works out for her . I hope

every one is doing well thank you and

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that is good . How old is Holly? and how is she doing?

>From: Ajaomom@...

>Reply- onelist

> onelist

>Subject: Re: [ ] hello

>Date: Thu, 8 Jul 1999 00:44:59 EDT

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>1999

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>From: Ajaomom@...

>

>Holly is not on pred at the moment, but i am not gonna say that too loudly

>

>---------------------------

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Georgina if my daughter is not handling the decrease of the pedie pred thius

time she will be coming of th metho and start on enbrle I am leary only

because if she gets any thing we wii have to stope until she is better ,and

it costs about 1,ooo a month and my insurance does not cover it all

is now down to 9 mg but she is starting to have some brake threw pain so we

have started the Motrin again ,so I hope to cotinue I hope that you have

better luck with your son!!! this time this is only our thierd try to get

here down you have had more tries then that by the sounds of it I am very

concerned about 's long term effects of pediepred I want her off

a.s.a.p!! well good luck &

>From: Georgina <gmckin@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] hello

>Date: Thu, 08 Jul 1999 12:38:58 -1000

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><< text1.html >>

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<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi n,

<p>Yup. I sort of know what you mean :-) & nbsp; I hope Holly continues doing

well without it. I often wonder what made Josh's case so much different

from others. He has never, ever been able to get off the prednisone, since

the very beginning of this illness. Not even for a temporary respite! It's

been over 4 years now. All we've ever done is raise and lower the dose,

according to the symptoms. Never getting lower than 9mgs. And it didn't

last very long at 9mgs either. It caused a major flare and he had to go

right back up to 30 within a week! Well, this time around, like all the

other times, I figure we've had more experience with it and maybe if we

go nice and slow, we'll have better luck (results). I sure hope so. It

just scares me a little to think that the longer he stays on it, the more

likely that he'll be dependent on it and the harder it will be to ever

get off it. And we all know about the side effects of long term use.

<p>A lot of people have told me that if he tries Enbrel it will probably

make it easier to lower. But our doctors are still cautious about trying

it, especially since the symptoms are usually controlled okay with the

current meds. Well, I guess only time will tell. Maybe one of these days.

He's down to 25 mgs a day right now. We'll have to celebrate if he gets

back down to 10mgs. I'll keep you guys posted!

<p>Take care,

<br>Georgina

<p>Ajaomom@... wrote:

<blockquote TYPE=CITE>From: Ajaomom@...

<p>Holly is not on pred at the moment, but i am not gonna say that too

loudly</blockquote>

</html>

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Holly is 5 diagnosed with systemic jra at 9 months old. Presently she is

doing fairly well, some joint pain, alot of rash, no real fevers though. We

are crossing our fingers and toes, that it will stay this way or better for a

while, but the more rational side of me says, i can see the freight train a

comin. She is taking just mtx right now, motrin as needed. Talk with you

soon, n

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