Re: Good News.....well relatively speaking!!!

October 13, 1999

HI

Thanks for your post and word of encouragement. I have a few questions.

When did you first notice an improvement with your listed protocol and what

dosages are you on? Is it your present llmd or your Boston doctor who

recommended all of the listed meds?

Thank yo so much and hope you continued improvements.

hugs,

lea

Hi Folks

I want to share some positive news in the hopes it gives others the needed

boost to continue the battle with lyme disease. I do not post much, but read

every bit of the digest, and my heart breaks with every discouragement. I

was

misdiagnosed with FMS and CFS for 5 years, like so many of us. I found a

LLMD, who diagnosed me, much to the disappointment of my regular PCP of 25

years. I am on day 123 of IV Rocephin, and day 18 of IV Azithromycin, and

day

35 of Plaquenil. I have had a decrease in my fatigue level, and although

progress is much slower than I would like, I am improving. I saw my LLMD

today and she is much impressed with how I look.....the way I move and the

sparkle in my eye. I was able to see a Dr. in Boston in August (referred to

me by people here and on the news group). My regular PCP has written to me

that he is much humbled by the note he got from the Boston doc regarding my

diagnosis, and he would be very happy to get re-involved in my care. Doesn't

wipe out the pain and agony, but does make a small dent in our local medical

community. (Our local ID doc is a protege of Steere's and said I did not

have

lyme.) I have also been in contact with 5 other people with lyme in my area

and someone is starting a support group at our local medical center (the

same

one who employs the ID doc......can't wait til he hears about it!!!) Today's

paper stated that the tick research lab (tick research.....don't take care

of

people) at Maine Medical Center has volunteers to collect ticks from deer at

the local tagging stations throughout the state during deer hunting

season....these ticks will be tested for diseases to track the prevalence of

lyme....this is the second year of this collection. SO......GOOD THINGS CAN

HAPPEN, HOWEVER SMALL. Getting to this point has been a long painful

struggle, and I know we have many more bumps in the road, but it is because

of the likes of us, that it will be easier in the future for others.

My thoughts are with you all,

Happy (Maine)

2 tick bites 9/94

Dx 4/99

Tx 6/99

>>

October 13, 1999

HI beth

Good to hear some of your neuro symptoms are abating. How high is this

rocephin dosage?

thank you

hugs,

Lea CT

<< So good to hear your news. I guess it's one doctor at a time.

I'm in my 5th week of IV Rocephin and I believe my doctor is willing to

continue with this for awhile. I've been feeling worse for a couple of weeks

now, with some other neuro symptoms abating. How long do you think you'll be

on Rocephin and when did you add a 2nd abx. Also, do you think that such a

high dose of Rocephin caused any specific symptoms? Thanks so much for the

info.

beth >>

October 13, 1999

Hi Happy,

I'm so glad that you are improving! Although I am not on IV abx, I am on

Biaxin and Plaquenil, and I think that for the first time, the fatigue

is not quite as bad as it was.

Congrats for educating your PCP. Everything that we can do to spread the

word helps. Take care, Joan LI NY

From: HapsQuilt@...

Hi Folks

I want to share some positive news in the hopes it gives others the needed

boost to continue the battle with lyme disease. I do not post much, but read

every bit of the digest, and my heart breaks with every discouragement. I was

misdiagnosed with FMS and CFS for 5 years, like so many of us. I found a

LLMD, who diagnosed me, much to the disappointment of my regular PCP of 25

years. I am on day 123 of IV Rocephin, and day 18 of IV Azithromycin, and day