Re: Survey - Antibiotic Use

[Guest guest]

is,

At the risk of sounding cynical, I myself am reluctant to offer personal

information about antibiotic use, especially to someone with whom I don't know.

I

like the concept of knowing your results (however unscientific they may be),

because I believe that most of us are in this together, (so to speak).

I haven't been on this list too long and I don't read every send. Are you a

long time member of this group? Are you well identified by the list owner and

monitors?

How can we be assured of your identity, sufficient enough to offer the kind

of info you are asking? I would like to help (as I'm sure others may), but it

can be risky (in this day and time), to be offering too much personal

information to strangers.

I see from your AOL profile that you are a Strategic Business Alliance

Consultant.

Does your request have any correlation to your employment? BTW, many of us

are too ill to work. I'm really not trying to be beligerant with my concerns,

but I do hope you can appreciate them.

Can anyone on this list vouch for is with enough confidence to give her

the kind of info requested?

Dewey

[Guest guest]

Sounds like a good survey. Who is your doctor that you are doing this

research for?

I think it would be good for all of us to read the answers to this survey as

it is being reported.

Hopefully, it will give us hope.

Have you also tried lymenet with these questions or done a search. I know

that I have read a similar post in the past.

[Guest guest]

A survey (i.e. " poll " ) could be set up on Lyme Aid that could ensure

privacy. It would also allow everyone to see the results.

Let me know if you're interested in this. I could create it with your

questions below.

=)

Robynn

-Owner

[ ] Survey - Antibiotic Use

Hi everyone:

Not sure the best way to do this. Hoping some of you will

participate.

I am doing a quick survey for my Doctor on how effective or non-

effective Antibiotic Therapy is for Lyme and TBD infections.

If you choose to particpate, please back door me, as it is difficult

for me to hunt through the messages.

I'll be happy to post the findings, (Approximately Mid-April)

I promise to keep all the names anonomous and confidential by

assigning a sequential number to track the responses.

The main information I need is the following:

1. How LONG have you had Lyme Disease or TBD:

2. Which TBD infections do/did you have?

3. How LONG were you on Antibiotic Therapy?

3. How LONG after Lyme/TBD Dx did you start ABX Therapy?

4. List each ABX, Dose, and Length of Time on ABX.

5. Have any of TBD infections been resolved, if so which one(s)?

6. Are you still on ABX therapy?

7. When did you stop ABX therapy?

8. Why did you stop ABX therapy?

9. Additional Comments Area for anything else you wish to add.

Again, please back door me with this info. And thanks for you help.

Sincerely,

is

[Guest guest]

I'm interested. I wonder how valid it would be. It seems that once people are

doing better, they no longer need to check in with lyme groups for the most

part.

[Guest guest]

Sounds good.

[Guest guest]

In a message dated 3/20/2004 4:35:13 PM Eastern Standard Time,

conniek@... writes:

Make me 31.........and now you have talked to someone who has recovered

through

abx treatment.....there is hope......I'm living proof.

Are you 100% as you used to be before you were ill?

Robyn

[Guest guest]

> I'm interested. I wonder how valid it would be. It seems that once

people are doing better, they no longer need to check in with lyme

groups for the most part.

>

Certainly, it is a good point that people who have recovered from

Lyme, et. al. most likely wouldn't be cruising .

However, my working theory, is there is a sub-set of Late Stage Lyme,

with or without Co-infectors which are not being helped by ABX

therapy. Or at least that is the premise I am currently debating

with my Doctor.

It is not to say ABX therapy doesn't work for some people, because I

believe it does.

Yet after talking with over 30 people, I have yet to talk to anyone

who has recovered by using ABX therapy. Most have been on ABX for 2

years, some 6 years, without resolving the infections.

That is very alarming to me.

Obviously, the next question would be ... why does it work for some,

but not for others.

But first ... let's find out what the Poll says.

Sincerely,

is

[Guest guest]

or Angel,

I, too, would like to include alternative methods to my treatment.

But, cost is an obstacle. I am looking for someway to bring in income to work

around my illness in order to pay for this alternative treatment.

[Guest guest]

Hello 1/23/04,

In reference to your comment:

è But, cost is an obstacle. I am looking for someway to

è bring in income to work around my illness in order to

è pay for this alternative treatment.

*****The cost is understandable.....I get a professional discount, from all

the work I did to help get our Arizona Homeopathic Medical Board of

Examiners...

So for me there is a GOD.....lol

****I would never attempt to treat myself, as it is too hard to get the body

into balance and on the healing road.....With my 20 plus years of alternative

research, I still would not attempt it.....

*****Let me know if there is anything I can do to help you.....

Keep a smile on your face, love in your heart and walk with the angels,

holding hand in the " chain of love " ......

Angel Huggzz

or Angel

http://www.dream-tool.net/tools/messages.mv?index+hepheimers (Msg Board)

www.hepheimers.com (website)

[Guest guest]

<<<<<<<It seems that once people are

doing better, they no longer need to check in with lyme groups for the most

part.>>>>

There is a few of us that still check in from time to time.

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

[Guest guest]

<<<<<<Yet after talking with over 30 people, I have yet to talk to anyone who

has recovered by using ABX therapy. Most have been on ABX for 2

years, some 6 years, without resolving the infections.>>>>

Make me 31.........and now you have talked to someone who has recovered through

abx treatment.....there is hope......I'm living proof.

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

[Guest guest]

Great! Hope once we get the Poll up and running you will participate

in the poll, so that their is a more balanced view.

Sincerely,

is

[Guest guest]

Would love to participate in the poll......I just wish all of you could have the

same success as I have. There was a time, I thought my life was over and that

I would forever be sick........but fortunately, I went on the right abx for the

right amt of time, and killed off the bacteria in my body.

I continue to spread the word about this terrible disease to all I meet.

It is a part of our Health Curriculum (by NJ law it has to be), but I make sure

it is. I have an awareness bulletin board, and have talked in some of my

colleagues' health classes on Lyme Disease. Awareness and Prevention is so

important!!!!!! We always do a TICK check when we come up from the ball fields

in PE class! In the spring and summer not a week goes by without someone

coming up to me to ask questions about Lyme Disease. Even though I am over the

disease, the memories are vivid and I will never forget how horrible my life was

during that time. I will never stop talking about Lyme Disease......It took

away my late 30's and early 40's.

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

[Guest guest]

Hi ,

I tried various Alternative Drs.......all gearing the treatment to the results

of numerous test results. (saliva, hair, blood, and urine)

I only found success after seeing an alternative Dr. in NYC. I spent last

summer going in weekly ( I live in NWNJ), for vitamin and mineral drips to help

rebuild my body. I continued after the summer for a few months, but now only

follow the supplement protocol designed especially for my deficiencies. It was

very expensive, but I truly believe it brought my body back to its healthy

state.

He is a wonderful Dr......but I only found him after I was treated for Lyme with

abx........I don't know what his treatment plan would have been for lyme

disease.

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

[Guest guest]

robin - i would be delighted to respond to the survey but don't know how to

backdoor alexis ...

deb

[ ] Survey - Antibiotic Use

Hi everyone:

Not sure the best way to do this. Hoping some of you will

participate.

I am doing a quick survey for my Doctor on how effective or non-

effective Antibiotic Therapy is for Lyme and TBD infections.

If you choose to particpate, please back door me, as it is difficult

for me to hunt through the messages.

I'll be happy to post the findings, (Approximately Mid-April)

I promise to keep all the names anonomous and confidential by

assigning a sequential number to track the responses.

The main information I need is the following:

1. How LONG have you had Lyme Disease or TBD:

2. Which TBD infections do/did you have?

3. How LONG were you on Antibiotic Therapy?

3. How LONG after Lyme/TBD Dx did you start ABX Therapy?

4. List each ABX, Dose, and Length of Time on ABX.

5. Have any of TBD infections been resolved, if so which one(s)?

6. Are you still on ABX therapy?

7. When did you stop ABX therapy?

8. Why did you stop ABX therapy?

9. Additional Comments Area for anything else you wish to add.

Again, please back door me with this info. And thanks for you help.

Sincerely,

is

[Guest guest]

Thought I would add a reminder to all and also wonder at this point why the

survey for a physician. Most llmd's know that with over 350 different strains

of this bacteria it takes many changes to see which one you have and which of

the antibiotics are going to work for you.

So................I see no point in this survey

Bev

[Guest guest]

ONe thought I had when answering the survey is that how do I know what would

have happened if I hadn't taken the abx?

For example I am still not improved yet, but what if I hadn't been taking the

abx the past year...would I have been in worse shape than I am now?

[Guest guest]

Bev,

is and I are working on getting this survey up and running as a Poll on the

Lyme Aid site.

This will allow all the members of Lyme Aid to see the results. This is NOT a

scientific poll! But it will provide us with a little inside information.

Though doctors who treat a lot of Lyme disease victims know a lot about

antibiotics, there are a great many doctors who are just beginning to learn

about Lyme disease. Sometimes those doctors are curious to see what others are

trying. Even some doctors who treat a lot of Lyme are curious to see what a

group of people are trying.

You certainly do NOT have to participate in this poll. Those who want to

participate can participate anonymously. The only information known about these

individuals is that they are members of Lyme Aid. Poll results should NOT be

used to determine treatment protocols. This is being done just to see what's

been tried.

We will let everyone know soon when the Poll will be available.

=)

Robynn

-Owner

Re: [ ] Survey - Antibiotic Use

Thought I would add a reminder to all and also wonder at this point why the

survey for a physician. Most llmd's know that with over 350 different

strains

of this bacteria it takes many changes to see which one you have and which of

the antibiotics are going to work for you.

So................I see no point in this survey

Bev

[Guest guest]

In a message dated 3/26/2004 9:08:55 PM Central Standard Time,

playpup@... writes:

For example I am still not improved yet, but what if I hadn't been

taking the abx the past year...would I have been in worse shape than

I am now?

>

This is a very important question. I took off time from the antibiotics only

to find worsening symptoms in other parts of my body even though I take many

supplements. I am on tinidazole now only and have many lumps in the affected

side of my neck and a feeling like my sinuses are draining. I once had a

diagnosis of m. fermentans and it was treated with IV cipro several years ago

but

the sinus issue has been ongoing...This is one difficult question although I

know personally of many people who have found the right balance for their own

bodies and have remained off antibiotics. It would be wonderful to be

asymtomatic and not have pain.

Donna

[Guest guest]

Hi

LOL. Kinda the million dollar question. Not sure we will ever know

for sure.

> ONe thought I had when answering the survey is that how do I know

what would have happened if I hadn't taken the abx?

>

> For example I am still not improved yet, but what if I hadn't been

taking the abx the past year...would I have been in worse shape than

I am now?

>

>

>

>

>