Re: LDSG Meeting--Jan 1999

January 3, 1999

Helen,

I am very interested in attending the meeting if I am well enough. You

mention that you have babesia and echiloric. I was just diagnosed with the

both of them last Monday after having lyme for 10 years. I am being treated

for echiloric first, then she will treat me for babesia. I am scared because

I heard the treatment for babesia is rough. Could you please tell me your

experience with the treatment. Also my doc is continuing to treat me for lyme

while treated the echiloric. I would appreciate any input. I am usually a

very strong person, but this week I feel like I'm falling apart. Thank you in

advance for your input.

Thank you,

January 3, 1999

Dear ,

I'm going to see my LLMD tomarrow AM. He is a distance, so we're leaving today.

I'll contact you as soon as I get back. Probably Tuesday. Hang in there.

Your friend,

Helen

Prinny328@... wrote:

> From: Prinny328@...

>

> Helen,

> I am very interested in attending the meeting if I am well enough. You

> mention that you have babesia and echiloric. I was just diagnosed with the

> both of them last Monday after having lyme for 10 years. I am being treated

> for echiloric first, then she will treat me for babesia. I am scared because

> I heard the treatment for babesia is rough. Could you please tell me your

> experience with the treatment. Also my doc is continuing to treat me for lyme

> while treated the echiloric. I would appreciate any input. I am usually a

> very strong person, but this week I feel like I'm falling apart. Thank you in

> advance for your input.

> Thank you,

>

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

>

January 4, 1999

, hi thought I would give you a little insight to babesia meds. I am

on my second round of mepron and zithromax. It has not been to sever on me.

The first round I just had a couple of days that were really flu like the rest

of the time I felt pretty good considering. I feel worse on doxy. I have

heard that the other treatment for Babesia is terrible, but seem to find most

drs using the new combination. Let me know how you feel. It hopefully won't

be as bad as you anticipate. I felt the same as you when I studied it, but

fortunately it was better that I expected, but who knows maybe it was because

I expected the worst.

Let me know how you do

Hugs

Amy

January 5, 1999

,

I saw your message to Helen. I've just been treated for Babesia with

quinine and cleosin and it scared me to death. The precautions and side

effects are enough to make you wonder if maybe you'd rather have the

Babesia. The doctor did a blood test to see if I could take the meds and

I could. I took the drugs every eight hours so I would have the maximum

time between doses and no overlap. The only side effects I might have

had was a couple of loose BMs at the end. I took them for a week and

haven't been back to the doctor yet. I'm assuming he'll do another test

for Babesia to see if they've vacated my body. I didn't have any

miraculous cure like the doctor was saying I might. In fact, I can't

tell any difference.

What is echiloric? I tested negative for erlichiosis but wasn't tested

for echiloric. I was told that getting rid of the co-infections would

make treating the lyme easier, also. I was bitten in 1987 but not

diagnosed with Lyme until 1991, and not diagnosed with babesia until

1998.

Good luck,

On Sun, 3 Jan 1999 13:14:57 EST Prinny328@... writes:

>From: Prinny328@...

>

>Helen,

>I am very interested in attending the meeting if I am well enough.

>You

>mention that you have babesia and echiloric. I was just diagnosed

>with the

>both of them last Monday after having lyme for 10 years. I am being

>treated

>for echiloric first, then she will treat me for babesia. I am scared

>because

>I heard the treatment for babesia is rough. Could you please tell me

>your

>experience with the treatment. Also my doc is continuing to treat me

>for lyme

>while treated the echiloric. I would appreciate any input. I am

>usually a

>very strong person, but this week I feel like I'm falling apart.

>Thank you in

>advance for your input.

>Thank you,

>

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January 5, 1999

,

Thanks for the info. Echiloric is erlichiosis. I just can't spell. I think

it's a lyme thing. Sorry. Thank you again.

Take care,

January 5, 1999

Amy,

Thank you so much for your response. You guys are the best. I have a great

family and a loving boyfriend, but noone seems to understand like you guys.

Thanks again,

January 6, 1999

Helen,

Thank you so much for writing me back. I feel better after reading your post.

I see my LLMD tomorrow so I will ask lots of questions. I hope you start

feeling better really soon. Thank you again. Thank you to all of you. I

never met a group that has been so caring and compasionate. I hope you all

get better really soon.

Your friend,

January 6, 1999

Dear ,

Sorry this is so late but I just got back from my appt. with my LLMD. First

of all, you never have to tell ME that " usually you are a very strong person "

because I know that already. We all are, these diseases just knock you out and I

think that sometimes we think people will think we aren't " strong " because we're

asking for help. I'm happy to help, anytime. I'm very ill now too, back on IV

Doxy

for a month and counting and I can barely move or get out of bed. I'm still

happy

to try and help because I feel useful! Besides, I do my share of " asking " and

will

continue to do so!

Ok, yes I have been treated for babesiosis and ehrlichiosis. Many MDs still

use clindomycin and quinine to treat babesiosis. That is where many of us hear

stories of people having a rough time with the treatment itself, let alone the

disease. I do know people who have responded to this treatment. Every drug has

side effects. These two can make you feel nauseous and CAN affect your hearing

but

all MDs know that and follow you carefully. Those are a few side effects. As

with

the treatment of Lyme, each MD feels comfortable with his/her own treatment

plan.

Many MDs now use Mepron/Zithromax combo to treat babesiosis. That is what I

had----at least 4-5 rounds so far. I did feel improvement. I have a + PCR and

antibody test for babesiosis and just had another test Monday for it. This time,

a

it is a blood smear on a slide--also Igenex Labs.. If +, I need more tx. Mepron

was not first formulated to treat babesiosis. It was used to treat AIDS patients

for a common lung problem they get. Therefore, I think that some MDs either

don't

feel comfortable using it for babesiosis or truly feel that the older tx works.

This is just my opinion. You know by now that babesiosis is a parasitic

infection.

It is similar to Malaria in that it kills red blood cells. I am anemic. That can

happen but my MD is insisting that I have a colonoscopy to make sure there are

no

other sites of bleeding. Cannot wait! He isn't too worried but he is right to

check. I do take an iron supplement.

I didn't have too much trouble with the Mepron/Zithro tx. Everyone is

different. Remember, when you have more than one disease going on, it is harder

to

get well but people do.

Ehrlichiosis is treated with Doxycycline usually. So many of us have been

dx

with this now too as you can see. It seems that your MD is addressing

everything.

Try and hang in there. I have been so sick. I DO know how you feel. When I don't

respond as soon as I like, I want to scream and try something else! It is so

hard

to be patient. Just listen and ask questions and as usual, follow your gut and

REST. I haven't been out of bed too much for awhile now. Can't fight it, just

have

to rest.

I hope I helped a little. We'd love to see you at our meeting on Jan. 27th.

In Feb. we are going to have a Family Nurse Practictioner who is a licensed

acupuncturist and well versed in complimentary treatments as well as

conventional

Western medicine. She sees a lot of Lyme patients and is very literate. She is

wonderful and has already agreed to speak on Feb. 24th, the 4th Wed. of Feb. at

the same place, same time (so far) I will post this information in full. We may

also have a surprise in March!! Can't even hint yet!!!

If I am very ill, my co-leader, will be there. I haven't missed a

meeting yet, somehow, since we began in July of this year. Jan 27th will be our

6th meeting. My husband also helps a great deal.

I hope 1999 will be better for all of us who are suffering. We have each

other and that is such a big help isn't it? Let me know how you are doing.