New to the Group

October 21, 2003

Good Morning everyone! I am new to the group as of yesterday. I accidentally

came across it doing more research on Lyme-an ungoing thing in my life since

1997. I have to leave for a Dr. appt. actually in appt. 20 min. to go & argue

about getting my IV put back in for Rocephin (All please wish me luck!). I have

been extremely ill on & off since 1997. I have what they tell me is " Chronic

late neurological lyme disease " . I not only have the classic problems of joint

pain, muscle pain, neck, headaches, severe migraines, but also, seizures, facial

palsy, arrhythmia, tingling in the fingers, trouble w/balance, sweating, dizzy

spells, trouble w/memory, no concentration, etc. etc. I have been hospitalized

3 times now for one week at a time. I have had every med. test I think on the

planet. I have had IV Rocephin twice, I was re-infected with Lyme this past

July & now my Dr. is saying that they can't do the IV again because it can

damage my liver! He is wrong! I have done much research & even called the

people who put the IV in the past two times & they told me that they do it

numerous times on people with chronic lyme. I am out of work on disability.

The orals no longer work. As a matter of fact, while being treated in Sept. my

counts went up an additional 1.60-I am now at, I believe 4.35 for titers.

Doctors just don't seem to get it. I take more meds then a pharmacy can hold.

It's so nice to know, at times, that I'm not the only one. Though loved ones

are very understanding, we all sometimes look fine on the outside & people don't

quite understand what we go thru on the inside. Please feel free to respond.

It's so great to have a place to chat with people & to hear what others are

going thru. By the way.....I am a 39 year old woman. I live in a wooded area &

I own animals. I am married with 2 teenage children. Gotta head to the Dr.

hope to hear from you all. Take care.

[ ] New to the Group

Good Morning All,

I am new the group and already feel at home. I am not sure exactly

how long I have had lyme, but know it goes back to at least 2000.

It may go back further, but I can't remember from on day to the next

(pun intended). I remember having a " bullseye " rash in 2000, but

dismissed it as a mosquito bite and forgot about it until this

year. Since that time I have made many trips to the Doctor for more

things than you can think of: back pain, knee pain, neck pain,

shoulder pain, gout in my left big toe, knumb toes/feet that are

hypersensitive to touch and temperature, muscle

twithing/convulsions, tmj, trouble swallowing, headaches, weekness,

chronic fatigue, memory loss, brain fog; the list goes on. The 2000

infection may have been the second time I was infected. I can

remember many of these symptoms going back to the 90s or maybe even

the 80s, but like I said my memory is very bad.

My current journey started in January of 2003 when my back out for

no apparent reason and was in to much pain that I couldn't walk. I

was also suffering from all of the other classic symptoms. At this

point I went on short term disability and was out of work for about

6 months. When my back did not respond to treatment, my Dr. started

looking into other possiblilities and ordered blood tests.

Everything came back negative for lyme. My Dr. is very lyme

literate and diagnosed me with lyme despite the negative blood test.

We needed the positive test to appease the insurance company so they

would approve the IV anti-biotics. Finally a blood test came back

with positive bands that the CDC uses for a positive. I made an

appointment with an ID doctor and was started on IV rocephin that

day. After 6 weeks of IV treatment, I started feeling better and

went back to work. I was still having some symptoms, so my ID Dr.

wanted me to continue the IV Rocephin, but the Insurance company

denied it. Within a week or two, I was starting to get sick again

and over labor day weekend things got worse than ever. By Sept 1st,

I was so weak, I could not move. To make a long story short, I

spent the next week in the hospital and have been on IV Rocephin,

Flagyl and Zithromax ever since. I am also out of work again,

indefinately. The insurance company I was with approved another 6

weeks of IV theropy. We found out in the beginning of October that

my employer on a leave of abscence with no pay or no benefits, so my

health insurance was cancelled. My insurance cancellation has

turned out to be a good thing, because my wife started insurance

with her employer, who has to clause for pre-existing conditions. I

am starting another 6 weeks with no lapse in treatment.

I am starting to respond to the rocephin and stringing together

longer periods of " feeling better " I am not sure how long I will be

on the rocephin, but my PC Dr. who has lyme disease and is very

literate, is talking six months plus. Hopefully that will get rid

of it, but I know that once it gets in your system for a long period

of time it is harder to get rid of.

Thanks for letting me babble. I tend to do alot of that these days.

Bill

October 21, 2003

Find a Lyme Literate MD and look into HyperBaric Oxygen Therapy (HBOT), Rife

and Far InfaRed Sauna (FIR). Rita

[ ] New to the Group

>

> Good Morning All,

>

> I am new the group and already feel at home. I am not sure exactly

> how long I have had lyme, but know it goes back to at least 2000.

> It may go back further, but I can't remember from on day to the next

> (pun intended). I remember having a " bullseye " rash in 2000, but

> dismissed it as a mosquito bite and forgot about it until this

> year. Since that time I have made many trips to the Doctor for more

> things than you can think of: back pain, knee pain, neck pain,

> shoulder pain, gout in my left big toe, knumb toes/feet that are

> hypersensitive to touch and temperature, muscle

> twithing/convulsions, tmj, trouble swallowing, headaches, weekness,

> chronic fatigue, memory loss, brain fog; the list goes on. The 2000

> infection may have been the second time I was infected. I can

> remember many of these symptoms going back to the 90s or maybe even

> the 80s, but like I said my memory is very bad.

>

> My current journey started in January of 2003 when my back out for

> no apparent reason and was in to much pain that I couldn't walk. I

> was also suffering from all of the other classic symptoms. At this

> point I went on short term disability and was out of work for about

> 6 months. When my back did not respond to treatment, my Dr. started

> looking into other possiblilities and ordered blood tests.

> Everything came back negative for lyme. My Dr. is very lyme

> literate and diagnosed me with lyme despite the negative blood test.

> We needed the positive test to appease the insurance company so they

> would approve the IV anti-biotics. Finally a blood test came back

> with positive bands that the CDC uses for a positive. I made an

> appointment with an ID doctor and was started on IV rocephin that

> day. After 6 weeks of IV treatment, I started feeling better and

> went back to work. I was still having some symptoms, so my ID Dr.

> wanted me to continue the IV Rocephin, but the Insurance company

> denied it. Within a week or two, I was starting to get sick again

> and over labor day weekend things got worse than ever. By Sept 1st,

> I was so weak, I could not move. To make a long story short, I

> spent the next week in the hospital and have been on IV Rocephin,

> Flagyl and Zithromax ever since. I am also out of work again,

> indefinately. The insurance company I was with approved another 6

> weeks of IV theropy. We found out in the beginning of October that

> my employer on a leave of abscence with no pay or no benefits, so my

> health insurance was cancelled. My insurance cancellation has

> turned out to be a good thing, because my wife started insurance

> with her employer, who has to clause for pre-existing conditions. I

> am starting another 6 weeks with no lapse in treatment.

>

> I am starting to respond to the rocephin and stringing together

> longer periods of " feeling better " I am not sure how long I will be

> on the rocephin, but my PC Dr. who has lyme disease and is very

> literate, is talking six months plus. Hopefully that will get rid

> of it, but I know that once it gets in your system for a long period

> of time it is harder to get rid of.

>

> Thanks for letting me babble. I tend to do alot of that these days.

>

> Bill

>

October 30, 2003

in 1979-83 i didn't have any seizures then,i got runover by a drunk person then

they started coming back except they were worse and earlier this year i had 605

seizures in 3 1/2 months time i've never had so many in my life in suck a small

period of time.now i take sunrider chinese herbal foods and i've gone nearly 5

months without a seizure and my seizures lasted as long as 39 minutes now the

left side of my brain is pressed into the right side and if i have anymore like

that the dr. said i'd be dead in no time.so my friend got me on sunrider and

i've been seizure free for like i say nearly 5 months.

Doug Wallace <lovetrees@...> wrote:I am a 35 yr old female. Seizures

since 15 yrs...1 when 4. no doc knows why! They scare me pretty bad! i mostly

have grand mals....always trying to make them " go away " i hate facing this

issue!! They have left for 4 years and recently come back full force. I hate

them!!!

October 30, 2003

if you would like a cd that explains the product i'll send you one just e-mail

me your home address and i'll send you one. THANK YOU,MARK HOGUE

Doug Wallace <lovetrees@...> wrote:I am a 35 yr old female. Seizures

since 15 yrs...1 when 4. no doc knows why! They scare me pretty bad! i mostly

have grand mals....always trying to make them " go away " i hate facing this

issue!! They have left for 4 years and recently come back full force. I hate

them!!!

October 30, 2003

On Wed, 29 Oct 2003 17:57:21 -0500 " Doug Wallace " <lovetrees@...>

writes:

> I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc

> knows why! They scare me pretty bad! i mostly have grand

> mals....always trying to make them " go away " i hate facing this

> issue!! They have left for 4 years and recently come back full

> force. I hate them!!!

I know what you mean. My daughter has absence and grand mal seizures and

I hate them too. I know that it's got to be hard to think that they are

gone and to then get them back again. I'm really sorry that you're having

to go through this. I will say a special prayer for you! God Bless You!

Grace

>

October 30, 2003

send me your personal e_mail and yes i would like the CD!!! When you send your

E-mail send it to Lovetrees@.... I will then give you my mailing

address. I really appreciate this!

Re: [ ] new to the group

if you would like a cd that explains the product i'll send you one just e-mail

me your home address and i'll send you one. THANK YOU,MARK HOGUE

Doug Wallace <lovetrees@...> wrote:I am a 35 yr old female. Seizures

since 15 yrs...1 when 4. no doc knows why! They scare me pretty bad! i mostly

have grand mals....always trying to make them " go away " i hate facing this

issue!! They have left for 4 years and recently come back full force. I hate

them!!!

October 30, 2003

thank you!

Re: [ ] new to the group

On Wed, 29 Oct 2003 17:57:21 -0500 " Doug Wallace " <lovetrees@...>

writes:

> I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc

> knows why! They scare me pretty bad! i mostly have grand

> mals....always trying to make them " go away " i hate facing this

> issue!! They have left for 4 years and recently come back full

> force. I hate them!!!

I know what you mean. My daughter has absence and grand mal seizures and

I hate them too. I know that it's got to be hard to think that they are

gone and to then get them back again. I'm really sorry that you're having

to go through this. I will say a special prayer for you! God Bless You!

Grace

>

November 23, 2003

Hi , welcome to the group! Probably not very many people here from CO,

but lots of nice people anyway! The listers here are from as far away as the

ines (Hi, Eben, you've been quiet lately!).

Marilyn in IL

new to the group

hi all

i just found out i have hep-c probably from doing drug many years

ago... anyone from aurora colorado ???

November 24, 2003

Welcome ,

Joiin the club. I was dx in 98. Probably had it for 30 yrs. Went

thru tx in 2001 with good results, but it's back now. I just try to

live a healthy life to keep the dragon at bay. Good luck.

rc

> hi all

>

> i just found out i have hep-c probably from doing drug many years

> ago... anyone from aurora colorado ???

November 24, 2003

shoot! I think 99% of heppers are in Colorado! here is a link where they

all are. I can't find any from Texas

http://www.hepc-connection.org/

new to the group

hi all

i just found out i have hep-c probably from doing drug many years

ago... anyone from aurora colorado ???

November 24, 2003

We live in Aurora and we met yesterday

Hi ! - Kerry

November 24, 2003

Hi. I got hep c probably the same way. I know we have a Coloradan in the crowd. I lived in Aurora for a couple of years. I lived on Hanover St. In Denver area from 82-90. I'm in Green Bay Wisconsin now. Welcome, you've found a good group of caring people and were here to help you in any way we can. Look forward to hearing more from you. -dz- <catz4evr@...> wrote:

hii just found out that i have hep-c probably from doing drugs many yrs ago. anyone here from aurora colorado ? ?

November 24, 2003

i'm from estes park, co. there are several of us from colorado

<<<<<<<<<<<<<<<<<*>>>>>>>>>>>>>>>

0 Tobi Hale, MSW & Sapphie, SDIT

l_

(/)_. It ain't my revolution if it ain't accessible!

WWJB: Who Would Jesus Bomb?

new to the group

> hi all

>

> i just found out i have hep-c probably from doing drug many years

> ago... anyone from aurora colorado ???

>

November 24, 2003

Since we are on the topic of geographical locations....Is there anyone that lives in San Francisco Bay Area on this group?

Vickie

-- Re: [ ] new to the group

Hi. I got hep c probably the same way. I know we have a Coloradan in the crowd. I lived in Aurora for a couple of years. I lived on Hanover St. In Denver area from 82-90. I'm in Green Bay Wisconsin now. Welcome, you've found a good group of caring people and were here to help you in any way we can. Look forward to hearing more from you. -dz- <catz4evr@...> wrote: hii just found out that i have hep-c probably from doing drugs many yrs ago. anyone here from aurora colorado ? ?

November 25, 2003

Hi, Vickie-

I live and work in San Francisco and have been here since October of

1969 when I hitch-hiked out from Chicago.

Lou [with his cats Bella and Sammy F.C.]

> Since we are on the topic of geographical locations....Is there

anyone that

> lives in San Francisco Bay Area on this group?

>

> Vickie

November 26, 2003

Lou, I have lived in S.F. before. I was born there and then right after high school I moved there, but now I am in Walnut Creek. So I have lived in the area all my life.

-- [ ] Re: new to the group

Hi, Vickie-I live and work in San Francisco and have been here since October of 1969 when I hitch-hiked out from Chicago.Lou [with his cats Bella and Sammy F.C.]> Since we are on the topic of geographical locations....Is there anyone that> lives in San Francisco Bay Area on this group?> > Vickie

November 26, 2003

Vicki-

I haven't been to Walnut Creek in years. When I first moved out here,

Walnut Creek was a nice quiet little town. Back around 20-years ago

that all changed as the area grew and WC started to develop problems

associated with larger communities.

Feel free to write me off list if you'd like.

L

> > Since we are on the topic of geographical locations....Is there

> anyone that

> > lives in San Francisco Bay Area on this group?

> >

> > Vickie

January 7, 2004

Dear New to the group, please share any info on helping with the pain. We

try to pass on anything that might help someone else. Sincerely, Fran

January 8, 2004

check out warmmeups.com. I heard about this on a arthritis newsgroup

and I ordered a pair. You warm them up in the microwave and they feel

AWESOME on your hands. They do stay warm for a long time. I took them

in and shared them with a co-worker today who has osteoarthritis and

her hands hurt all the time. She said she was in love with them and

she ordered two pairs. Next week they are coming out with ones for

the feet and I will definetely order a few pairs. Thanks for letting

me share. I know we all want the pain just to go away or finds way to

help decrease it.

ALison

-- In , " Fran Mishler " <fran@m...>

wrote:

> Dear New to the group, please share any info on helping with the

pain. We

> try to pass on anything that might help someone else. Sincerely,

Fran

January 8, 2004