Hello

[Guest guest]

ellen,

welcome to our neigborhood......about abx's have u tried intramuscular

injections .....biacilin worked the best for me out of all the abxs

oral,iv,ect...... also it was very easy on my gut....just a thought glad u

have some energy to share with us .....god bless

Reid

[Guest guest]

Hi Ellen,

Sorry to hear you're not well. But it does sound like you need more abx. If

almost 2 years of Biaxin didn't help, it sounds like you need to try something

else. We all react to abx so differently, Biaxin may not be the one that will

work for you. I've read several posts on the list where some of us are taking

a combination of abx's and are doing well (It's also in Dr. B's guidelines).

Perhaps they can give you better advice in this area. I just came off IV and

I'm hoping to start orals, of some sort, next week, so I don't have any

experience with this. But you sounded as if you were hesitant to start the

abx again, and I just wanted to give you support in your decision. I believe

there's a treatment out there that is right for each of us, even though it may

take time to find it!

Best Wishes and Happy Thanksgiving,

[Guest guest]

I saw my internist yesterday about going back on antibiotics. (I've been

off for 3 years and have still been disabled. An orthopedist recently

told me that my bilateral achilles tendinitis probably indicated that my

lyme was still active).

My internist is willing to do another course of antibiotics with me,

but he is not optimistic that this is the proper treatment. He says he

has become disenchanted with repeated antibiotic treatments and has

started to explore cfs treatments for lymies who have already had

substantial course of antibiotics. While he could be wrong in his

judgment, I do believe he is smart and well-informed about lyme.

I'm pretty sure I want to try antibiotics again, but have some

reservations that I would like to get your input on.

1. When I was on biaxin (2000 mgs a day) for almost 2 years,), I don't

know that I ever had a real herx. I felt lousy plenty of times, but

this was no different from before tx Does everyone who is helped have a

herx?.

2. I finally felt a litttle bit better after a long term treatment,

but not really much. The time that I felt best started a few months

after tx. If antibiotics are wrking, should I feel better while on them?

3. My doctor said that Medicare will only pay for IV treatment if I'm

in the Hospital.

I had an allergic reaction to penicillin ,, so I probably can't haave

intramuscular antibiotics.What have people's experience been with

repeated oral antibiotics?

I tried to make this post less wordy, but finally had to give up.

Hopelessly long winded - but trying to improve.

Ellen

[Guest guest]

Hi ,

Thanks for your thoughts on this. I am completely confused to the point

of feeling paralyzed about making any decisions. I haven't looked at Dr

B's guidelines about this, but will now. I hope you are feelin well

after your IV treatment.

Ellen

[Guest guest]

From Debbie, dap8882@...

Thanks Connie. Even if you said the wrong name, I enjoyed it anyway. And yes

i hope we can all help each other.

Love to all

Debbie P.

[Guest guest]

Dear Ellen:

I read your letter and was wondering, where is Stonybrook hospital? The

reason I'm asking is, I have lymes and my infectious disease doctor has run

out of ideas and I'm looking for HELP. I don't Know where to go for help. I

live just out side of Fort Worth, TX. Do you have any suggestions?

I have had lymes for about 20 years, but have been mis diagnosed with CMT up

until June of this year. Please back,

Thankyou,

Clowers

[Guest guest]

In a message dated 11/30/98 8:37:34 PM CST, clow@... writes:

<< I read your letter and was wondering, where is Stonybrook hospital? The

reason I'm asking is, I have lymes and my infectious disease doctor has run

out of ideas and I'm looking for HELP. I don't Know where to go for help. I

live just out side of Fort Worth, TX. Do you have any suggestions?

I have had lymes for about 20 years, but have been mis diagnosed with CMT

up

until June of this year. Please back, >>

My understanding is that there is a support group in the DFW area and a couple

of good docs. I live in Houston and that is too far away for me but I know

there are some on the list that live in the DFW area. If not on this list,

might be the sci.med.lyme newsgroup.

[Guest guest]

Hi : Stonybrook is on Long Island, New York. It is a lab that your MD

can use if he wishes to send for test results there, Another good lab is

Igenex Labs in Palto Alto, California, They do urine antigen tests which are

very good in dxing patients who have seronegative blood work, because of many

reasons, Perhaps you can call 1-800-tick-bite, its a toll free number that

can sometimes put you in touch with mds or groups that can give you help in

your area. I'm in Pennsylvania and drive to NJ to my MD because she

specializes in lyme..especially chronic late-stage lyme. Depending on how

open minded your md is, some of these specialists will work with your

physician at home, and only see you quarterly or bi-annually, as long as

treatment is coming along OK. If that is the path you choose, I'm sure all 70

of us can come up with some names of good LLMD who you can call and see who

can see you. I personally didn't get positive blood work for YEARS, only

positive urine antigen tests. So, keep the faith and keep trying, praying,

and searching for answers yourself cause the majority of MDs don't know enough

about lyme.

hugs, Gail

[Guest guest]

Dear ,

Stoneybrook is on Long Island,New York. I have never been there ,

but my doctors have sent my lyme blood tests to their laboratory f

because they are more accurate. I don't know what to recommend to you

, except that you call the Lyme Disease Foundation in Conn.

(860-525-2000). I think that if they don't have a doctor in your area

to recommend , they will have one of their doctors confer with yours.

They told me this a couple of years ago and I hope it's still true.

Good lluck, and let lme know what happens.

Ellen

[Guest guest]

,

I have forwarded your letter to Sandi , who is a member of this

mailing list, but I haven't heard from her in awhile....anyway, she lives in

Ft Worth, has Lyme disease also for over 20 years, as does her husband, and

she has a good doctor she can refer you to....If you don't hear from her

soon, let us know, and I will try something else.

What is CMT????

Marta

--

>From: clow@...

>

> I don't Know where to go for help. I

>live just out side of Fort Worth, TX. Do you have any suggestions?

> I have had lyme for about 20 years, but have been mis diagnosed with CMT

up

>until June of this year. Please back,

>

[Guest guest]

Hi ,

There is a doctor in Branson, MO if you want his name, let me know. I don't

know of one in Texas yet.

Connie

[Guest guest]

hIEllen....Not to get too lengthly, I have been on antibx for 8 years

STRAIGHT> The orals didn't do much, I felt bad most of the time. I have been

on bicillin IM for a few years now, working up from a small dose because of

HORRIBLE HERX ...!! sO YOU may want to be tested by allergist to see if it is

really penicillin or a reaction to the antiobiotic because of violent herx.

Thats been my experience. I still need my shots....but not as often.

Hope this helps some.

Regards & Hugs,

Gail

[Guest guest]

Hi ,

Welcome to the group

Connie

[Guest guest]

Hello

I will stick around. I feel that with my experince I can help others. It's

my way of giving back for all the help that I got when i was younger. I would

also like to thank you for putting my website url up. I am getting ready to

put the link to the mailing list on my website right now. I also would like

to tell everyone on wed. now on arthritisnet I will be hosting a chat on

still's and I would like to welcome you guys to come and join.

<< rom: georgina <gmckin@...>

Hi ,

Glad to have you on board. I've been enjoying your messages on the other list

and

I'm sure that your contributions here will be greatly appreciated. We had one

other adult who had had jra as a child but she left the group after a week.

Maybe

you'll be able to put up with us for a bit longer than that! Not sure if

you've

noticed but your Homepage is one that I've included on mine, as a great place

to

go for more information about systemic jra.

Aloha,

Georgina >>

[Guest guest]

Hi ,

Glad to have you on board. I've been enjoying your messages on the other list

and

I'm sure that your contributions here will be greatly appreciated. We had one

other adult who had had jra as a child but she left the group after a week.

Maybe

you'll be able to put up with us for a bit longer than that! Not sure if you've

noticed but your Homepage is one that I've included on mine, as a great place to

go for more information about systemic jra.

Aloha,

Georgina

Ac24@... wrote:

> From: Ac24@...

>

> Hello Everyone

>

> Hi there my name is . I am not a parent of a kid with systemic onset,

> but I am the one with it. I am 24 now, but I have had since I was 8 and I

> feel that I could help you guys. Since I have been through just about

> everything out there. My jra was and has been very server. If there is

> anything that I could help with just ask.

>

>

[Guest guest]

Hi Anne,

Sounds good to me, don't look a gift horse in the mouth, or so they say.

Are you still on abx? Keep us posted,

Hugs,

Marta

Hi you guys....I miss everyone. How is everyone doing? Sorry I haven't been

on in awhile, but I have been reading some of the messages.

I've been feeling pretty good. Trying to get some exercise and get these

joints a little less achy. I really haven't had any other symptoms. The last

time

we checked, my test came out normal...and since then, I have been ok. Still

get a little joint pain here and there, but I'm holding up.

[Guest guest]

Hello Marta,

No, I am not an abx's anymore. When I first was diagnosed, I was on

it for

4 weeks and after reading things and listening to people here, I asked

my Dr for

at least 2-4 weeks more, and he gladly did so.

Hugs back at ya,

Anne

Marta McCoy wrote:

> Hi Anne, Sounds good to me, don't look a gift horse in the mouth,

> or so they say. Are you still on abx? Keep us posted,Hugs,Marta

>

> Hi you guys....I miss everyone. How is everyone doing?

> Sorry I haven't been on in awhile, but I have been reading

> some of the messages.

>

> I've been feeling pretty good. Trying to get some exercise

> and get these

> joints a little less achy. I really haven't had any other

> symptoms. The last time

> we checked, my test came out normal...and since then, I have

> been ok. Still

> get a little joint pain here and there, but I'm holding up.

>

[Guest guest]

I do see rhuematologist, but I was just wondering what others have

experienced. Thanks for letting me know about the conference, but I am

up in Canada, and won't likely be able to attend. Talk to you in the

future,

Lauri

--- MarkusMgru@... wrote:

> From: MarkusMgru@...

>

> sorry to hear you are developing PA. as far as

> getting official with the PA

> see a rhuematologist. If you would like to meet with

> other young adults with

> similar ailments, the Chatanooga chapter of the

> Arthritis Foundation is

> hosting the south east regional AJAO(American

> Juvenile Arthritis

> Organization) conference this August 6-8. This

> conference will also have a

> section just for young adults, i am also planning on

> attending.

>

> mark

> markusmgru@...

>

>

------------------------------------------------------------------------

> Wanting to get back in touch with old friends?

>

> Get re-acquainted through a ONElist community.

>

_________________________________________________________

[Guest guest]

Haven't heard of your type of cancer. But for building up I'm passing on

info our nutritionist gave to my husband. He is to undergo

chemo/radiation for 5 wks. Is healing after surgery. Rice Milk Vanilla

Flavor-(most supermkts carry) highly nutritious can be whipped in blender

with an egg (add Powdered magnesium 1/8 tsp to 12 oz) and powdered brewer's

yeast...about 3 tsp. (add vanilla extract 1 tsp_) whip in blender

w/strawberries/blueberries, etc. Make a large qty ...can be taken thruout

the day so as not to overload a system that is rebelling. Also plain yogurt

with fresh strawberries or a bananna + and egg (optional) add a little milk

for liquid whipped in the blender will resemble a milk shake. He needs

fiber: If he can take just several mouthfuls of oatmeal w/whole milk (skim

has more carbs and sugar) during the am with raisins and walnuts (crushed)

will carry him and provide bulk.

Also old fashioned chicken soup. If only a spoonful @ a time will be

helpful. Probably is painful to swallow.

This is not an easy time. My prayers are with you.

[ ] Hello

Hello-just a quick intro as I don't want to bore anyone!I have just

signed up for this list-and haven't begun to receive the digest as yet.

My name is and my husband Tom-completed 40+ rad treatments in Feb.

He was dx'd in late Feb. w/stage 1-1/2-nasopharyax cancer!I am on

several support group lists-and correspond w/several other npc

survivors/caregivers!!This is suppose to be a " rare " -found mostly in

Orient-type cancer!Rare-any cancer is not!!but none of the

correspondants are Oriental-and we can not find any similiarities!Anyone

out there ever heard of this cancer-ever heard of anyone who has/had

it!!But the most important part-why I'm here!-want to be rid of it!!and

don't want any more of it!!Only problem is-40+ rad.treatments do not

make for a very healthy anything!Weight loss-up to 40lbs-needs to be

impoved-no taste-no saliva-no desire to eat-and what goes down the best

isn't the best to build one back!!We have managed to stay w/liquid

vits/herbs but not physically able to/or desire to try any cleansing

that are taxing at the time!The energy/ability to do is coming back ever

so slowly-and know the time will come when maybe the cleansing may be an

option!But for the time I need to know of other avenues to travel to

continue the building/and not allowing to return!!Any/all suggestions

will be helpful and appreciated!!After reading a few digests I will

perhaps get a feeling for the list!!and what goes on-in the

meantime-here I am!!anxious to hear any/all ideas!!Thanks-/Tom

[Guest guest]

Hi Kenny,

Welcome to the group. Another Norttheasterner! What type of PA do you have

and what meds are you on? There is a wide range in our group of the PA. Of

course, you do not have to answer! Just trying to get to know you a little

better!

[Guest guest]

In a message dated 6/8/99 6:08:56 AM Eastern Daylight Time,

LymeDizzez@... writes:

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

>>

..pull up a chair...vent...ask questions....or share stuff you

find....if it wasn't for the net...so many people would be suffering alone or

unable to get the knowledge they need to help educate their

Drs...unfortunately Lyme disease seems to be a disease where if the patients

totally trust a non-lyme literate Dr., their diagnosis is delayed, treatment

is inadequate....and instead of recovering...the person gets sicker....

Welcome, Bernadette

[Guest guest]

In a message dated 6/8/99 6:53:17 AM Eastern Daylight Time, BratDet@...

writes:

<< ....And instead of recovering...the person gets sicker....

Welcome, Bernadette >>

Thanks Bernadette. It's nice to be here. I'm scheduled to see a neurologist

on Friday and my regular physician is on a mission to find some kind of Lyme

Disease specialist in this area.

, New Bedford, MA,

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

ICQ # 26791014

[Guest guest]

In a message dated 6/8/99 9:36:24 AM Eastern Daylight Time,

mlmccoy@... writes:

<< If you do have Lyme disease, prednisone or other steroid

treatments will make you feel much worse. >>

OK, LOL. I'm taking prednisone now. I did have a bullseye bite last summer

which just looked strange to us then. It went away and we never thought about

it. I have been told that so little is know about Lyme Disease that it hasn't

even been proven it has to come from a bite. I started with excruciating pain

in my head and my back. I then went on to face paralysis and wobbly arms and

legs muscles. Face paralysis has improved a bit but I am still wobbly when I

walk. My arms and hands are constantly feeling pins and needles and I can see

anything past two feet clearly. I had 20/20 vision. Know I live in a blur. I

am on daily antibiotics which I am learning to administer to myself through a

midline. I'll be on the antibiotics for the next four weeks.

Tests have been performed and one by one, possibilities are canceled out. It'

not meningitis, multiple sclerosis, no aids, no tumors, no brain damage. Just

extreme nerve damage. And an awful lot of pain.

Thanks because I am scared stiff here.

, New Bedford, MA

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

ICQ # 26791014

[Guest guest]

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

[Guest guest]

Welcome ,

Sounds like you have been put through a wringer! Do you recall a tick

bite at all, many don't. The diagnosis of Lyme disease is mostly clinical,

based on symptoms. If you do have Lyme disease, prednisone or other steroid

treatments will make you feel much worse. Can you provide us with a bit of

your history these past three weeks? There are many experienced people who

belong to this list, and I am sure you will get some responses, that may

help you and your neurologist determine what is happening.

There is a lot more Lyme disease in Massachusetts than you are aware of,

presently there is a write in campaign to your Governor asking him for

assistance in recognizing the disease and requiring insurance companies to

pay for long term treatment. I believe if you contact:

: Mass. LD Coalition

P.O. Box 1916

Mashpee, MA 02649

EMAIL: molalor@...

you may possibly learn more about the disease in your state, as well as

possible Lyme literate doctors who can help you.

Wishing you the best,

Marta

>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.

>

>